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Medical-Legal Partnerships in Cancer Care

  • Tomas Bednar
  • Domna Antoniadis
Chapter

Abstract

This chapter provides an overview of the medical-legal partnership (MLP) service delivery model, which integrates legal services into healthcare settings as a means of addressing the legal aspects of patients’ social determinants of health. It introduces the underlying concepts that drive MLPs, including the five “I-HELP” legal needs categories, and contextualizes them in the world of cancer care. The chapter then provides a basic introduction to the cancer-specific legal needs of low-income cancer patients for each of the five categories: income, housing, education and employment, legal status, and personal and familial stability. Each legal “snapshot” discusses the legal principles of each need, how those principles apply to cancer patients, and how an interdisciplinary MLP model can use those principles to address the needs of its patients. The discussion is intended to educate cancer providers on the MLP model as well as provide practical advocacy tips. It concludes with two case vignettes that demonstrate how MLP intervention can improve patient’s overall well-being and quality of life.

Keywords

Medical-legal partnerships Social determinants of health Legal needs Cancer Legal determinants of health Law Legal aid and health National Center for Medical-Legal Partnerships 

Abbreviations

ACA

Patient Protection and Affordable Care Act

ACP

Advance care planning

ADA

Americans with Disabilities Act

ALJ

Administrative law judge

BCCPTA

Breast and Cervical Cancer Prevention and Treatment Act

CAL

Compassionate allowance

CHIP

Child health insurance program

FDCPA

Fair Debt Collection Practices Act

FHA

Fair Housing Act

FMLA

Family Medical Leave Act

FPL

Federal poverty level

HCPOA

Healthcare power of attorney

IEP

Initial enrollment period

I-HELP

Income, housing and utilities, education and employment, legal status, personal and familial stability

LPR

Legal permanent resident

MA

Medicare advantage

MAGI

Modified adjusted gross income

MLP

Medical-legal partnership

National Center

National Center for Medical-Legal Partnerships

OOP

Out-of-pocket expenses

POA

Financial power of attorney

PRUCOL

Permanent residence under color of law

PRWORA

Personal responsibility and work opportunity reconciliation action

SDH

Social determinants of health

SGA

Substantial gainful activity

SSA

Social security administration

SSDI

Social security disability

SSI

Supplemental security income

TANF

Temporary assistance for needy families

TERI

Terminal illness cases

TWP

Trial work period

Introduction to the Medical-Legal Partnership (MLP) Model

Medical-legal partnerships (MLP) are a service delivery model that integrates legal services into the daily functions of healthcare institutions and practices in order to address the health-harming legal needs of low-income individuals and improve outcomes at the patient, institutional, and population levels [1]. The model is both a result and driver of health care’s broader shift towards addressing the overall social determinants of health (SDH) [2]. At their core, MLPs seek to (1) provide patients direct legal intervention and advocacy, such as assistance with public benefits and representation in court hearing; (2) implement institutional-level changes, such as creating hospital-wide legal need screening protocols; and (3) affect broader policy changes, such as advocating for increased enforcement of lead laws in identified at-risk communities [3].

The MLP model formally began in the Department of Pediatrics at Boston Medical School in 1993. Since then MLPs have spread to 294 healthcare institutions in 41 states [4]. The National Center for Medical-Legal Partnerships (National Center) develops tools and resources for stakeholders interested in establishing a MLP. Among these resources is the “MLP Toolkit,” which offers an in-depth stepwise guide for healthcare and legal providers that seek to collaborate on a new MLP initiative.

Typically, MLPs consist of a partnership between a healthcare institution or practice and a nonprofit legal aid clinic with the goal of incorporating legal aid services directly into the regular practice of the healthcare partner. However, one of the key strengths of the model is its flexibility in adapting to the particular circumstances of each partnership and community. As a result, there is a wide variety of MLP types and an even broader variety of potential clinical partners such as acute care hospitals, hospice centers, federally qualified health centers, cancer centers, pediatric primary care offices, and community-based health clinics [5]. Legal partners can be pro-bono attorneys offering free services, local nonprofit legal aid organizations, and law schools providing student support. Other MLP partners can range from state departments of health and aging, nonprofit service organizations, and local community organizations to large corporate sponsors. MLPs cultivate and reward creative approaches and seemingly unlikely partnerships.

Clinical and Legal Models That Incorporate Medical-Legal Partnership Services into Cancer Care

The practical realities of resource allocation and funding that providers and MLP advocates often face require partners to implement innovative approaches when integrating legal services into a cancer setting.

From a clinical practice perspective, the flexibility of the MLP model allows it to be introduced into most cancer treatment venues. One particularly fruitful area of integration is introducing MLP services into a patient navigation model. Patient navigation is generally understood to mean the “individualized assistance offered to patients, families and caregivers to overcome health care system barriers and facilitate timely access to quality medical and psycho-social care from pre-diagnosis through all phases of the cancer experience” [6]. Despite the recent growth and success of the model, providers that operate in a patient navigation system have expressed frustration with their inability to handle certain legal and system needs of patients [7]. The MLP model can integrate legal services within the patient navigation process, using tools and services that most effectively assist this distinct populations [8].

From a legal practice perspective, the types of legal resources that can be utilized in a cancer MLP can vary widely and are dependent on the resources available in the particular community. Some of the common cancer MLP delivery models include the following:

Hotline

A legal hotline is a service designed to provide legal advice and information by telephone [9]. This includes programs that provide answers to clients’ legal questions, analysis of their legal problems, and advice on solving those problems. Some hotlines may perform brief services such as making phone calls, writing letters, or preparing documents on behalf of clients. Hotlines may also provide referrals to other programs or serve as an intake for a full-service program. Hotline call handlers may be attorneys, paralegals, or law students, working under an attorney’s direct supervision. The Cancer Legal Line of Minnesota is a strong example of an organization leveraging limited resources to best assist their community needs.

Law School Partnerships

Oncology practices with access to law schools can create a partnership that incorporates law students. Often, this is done by developing a clinical practice course within the law school that provides specialized training to the law students on practicing in this type of environment. Prime examples of legal needs that lend themselves to this type of model are advance care planning documents and social security disability benefit cases. The students must be supervised by licensed attorneys, which are usually faculty members of the law school, or local legal aid attorneys. Incorporating law students provides for a more didactic and interactive approach to the treatment of legal needs in a cancer setting.

Pro-Bono Partnerships

Many medical-legal partnerships (MLPs) rely on local pro-bono attorneys to partner with them and assist with caseloads and specialized case types. For example, an MLP that primarily focuses on public benefits and housing may nevertheless require assistance with family law and immigration issues. Local attorneys that are willing to partner with the MLP and take on these cases provide an invaluable resource at filling the gaps that typical MLP services cannot fill. Alternatively, in locations where other legal services are limited, cancer centers can consider partnering with local attorneys to provide limited services, such as monthly advance care planning document clinics or general “know-your-rights” education sessions.

On-Site Integration

The ideal cancer MLP incorporates an attorney on-site into the practice of a cancer center. The attorney, usually an employee of a legal aid agency, sees patients referred to them by the providers and works collaboratively to address their legal needs. They also train providers on how to identify those legal needs and work to implement institutional- and population-level interventions. Just as any provider on the healthcare team, an MLP attorney’s efficacy is directly connected to the degree of integration into the practice, so healthcare providers are encouraged to consider the attorneys as an essential part of the care team.

Deciding on the type of appropriate delivery model for a particular treatment environment requires, in large part, an assessment of (1) the unique legal needs of the patient population and (2) the institutional and community resources available to address those needs. While the process of developing these assessments is outside the scope of this chapter, providers or entities interested in starting a cancer MLP should refer to the National Center’s MLP toolkit for further assistance, which is available on their website [4].

Medical-Legal Partnership: Addressing Social and Legal Determinants of Health

The primary goal of MLPs is to improve patient well-being by addressing social determinants of health and eliminating legal and regulatory barriers to care. An MLP’s ability to address the legal needs of its patient population relies upon a comprehensive understanding of the types of unique legal barriers that the population faces and how those barriers relate to the overall social determinants of patient health.

A combination of factors impacts the health of individuals and communities. Social determinants of health are structural constructs and conditions in which people are born, grow, live, work, and age that have an impact on the overall well-being and quality of life of individuals [10]. There is growing consensus on the negative impact that SDH can have on health equity, particularly as they relate to the poor and underserved as well as those suffering from chronic health conditions.

The “law,” which in this context is a broad term referring to local, state, and federal statutes and codes, judicial case law, administrative regulations, and relevant institutional policies and procedures, can often serve as both an intentional architect and indirect agent of SDH. The law interacts with SDH by “(1) helping structure and perpetuate the social conditions that we describe as ‘social determinants’ and (2) as a mechanism or mediator through which social structures are transformed into levels and distributions of health” [11]. As an example, adjustments in eligibility criteria for the Supplemental Nutrition Assistance Program (SNAP —previously known as food stamps) or other public benefits can have direct consequences on the overall well-being of individuals [3]. A more distal example is child education laws, which can be considered to impact population-level health when you consider the link between health and education level [1]. In both cases the underlying legal frameworks mold much of the health-related social and environmental realities of the individuals’ lives.

Generally, the types of legal issues that impact the well-being of low-income individuals can be separated into five categories using the National Center’s acronym “I-HELP” [12]. These categories include income, housing and utilities, education and employment, legal status, and personal and family stability. Figure 11.1 outlines the five categories and highlights how MLPs can assist providers in addressing the legal needs associated with them.
Fig. 11.1

Five categories of legal issues that impact the well-being of low-income individuals [13]. Chart was recreated with permission from Marple, Kate. Framing Legal Care as Health Care. Washington, DC: The National Center for Medical-Legal Partnership, January 2015

Within the context of individual MLPs, the five I-HELP categories are likely to present themselves through idiosyncratic sets of legal needs. For example, the legal needs of young families in an outpatient pediatric setting tend to focus on special education issues and denials of public benefits [14], whereas the needs of individuals in an outpatient oncology setting, as discussed further below, usually focus on advance planning documents and financial security [15]. For the former group, the primary I-HELP categories are “education and employment” as well as “income.” For the oncology group, the emphasized I-HELP categories are “personal and family stability” and “income.” While there is commonality between the groups’ overall categorical needs, each patient population expresses those needs in a distinct fashion. This unique expression of overall legal needs can be understood as the “legal determinants” of that population’s health.

Each MLP partnership must adjust their services and practice flow to match their patient populations’ particular needs. This general principle also applies to cancer-focused MLPs, which must come to understand how the particular legal needs of their patients can exacerbate the physical, mental, and emotional impact of a cancer diagnosis. By understanding the distinct legal needs of cancer patients, MLP teams can work to accomplish their goal of improving the overall health of cancer patients.

Legal Needs of Cancer Patients

A 2007 study that drew on responses from 50 mixed-site cancer patients showed that the patients reported cancer-specific legal needs as having a significant impact on their quality of life and that despite this impact those needs were not being met through the course of their treatment [15]. The patients identified and rated 30 medically related legal needs on their impact on quality of life and the degree to which patients felt those needs were being addressed in their care. The researchers grouped the legal needs into broad categories based on initial groupings provided by patients. The resulting four categories were health care related (healthcare proxies, advance directives, etc.), employment related (FMLA, insurance rights, disability issues, etc.), financial related (social security, pensions, IRS, financial planning, etc.), and estate planning (wills, inheritance, probate, custody issues, etc.). Almost uniformly, each category of need had a perceived significant impact on quality of life and was viewed as largely unaddressed in care.

Comparing the National Center’s I-HELP categories in Fig. 11.1 to the four cancer-specific categories from the Zevon et al. study further shows how patient populations tend to retain the general themes of the I-HELP categories, albeit in their own unique fashions. Both sets of categories include express concerns around financial, familial, and personal stability. However, the cancer study’s highest ranked category with respect to impact on quality life, the “health-related” category , focused almost exclusively on advance care planning matters, including advance directives, do-not-resuscitate orders, and powers of attorney. These are legal needs that would only be a small part of the broader “personal and family stability” I-HELP category. Yet for cancer patients, the need for advance care planning is the primary manifestation of patients’ concerns around personal and familial stability, and is subsequently perceived as having a significant impact on quality of life.

In this section we provide specific insights into the most common health-harming legal issues that cancer patients face. These issues should be the starting point of any cancer MLP’s legal needs assessment and can reasonably be expected to make up a significant portion of its practice. Each main section represents one of the I-HELP categories and its cancer-specific component legal needs. The legal needs snapshots include an introduction to the basic underlying legal principles, how those principles apply to cancer patients, and practice tips for cancer MLP advocates.

Income, Insurance, and Debt Maintenance

Representing the first of the I-HELP categories, the legal needs below focus on the overall financial stability of low-income cancer patients. The primary factors involved in this category include stable and consistent income streams, access to sufficient medical coverage, and management of medical and consumer debt.

For income maintenance, we consider the legal needs associated with the disability benefit programs operated by the Social Security Administration (SSA), which are two of the main sources of income for individuals with cancer. For medical coverage, we discuss the primary sources of coverage for most cancer patients, which are Medicaid, Medicare, and private insurance. For debt maintenance, we outline the approach that providers and MLP advocates should take in stabilizing and mitigating the impact of medical and consumer debt.

Social Security Disability and Supplemental Security Income

The Social Security Administration (SSA) manages two programs that pay monthly disability benefits to people under age 65 who cannot work for at least a year because of a severe disability: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) [16]. The requirements for medical proof of disability are the same for both programs.

SSDI benefits are an insurance program and are paid to people who have worked long enough and recently enough to be eligible for the program. Those who receive SSDI benefits for at least 24 months also qualify for Medicare. SSI disability payments are for adults with limited income, resources, and work histories. No prior work is needed. SSI recipients generally qualify for Medicaid.

Since SSDI is fundamentally an insurance program paid for by taxes on a worker’s wage whereas SSI is a welfare program for the needy, SSDI benefit amounts are usually higher than SSI payments. In certain circumstances, individuals can be eligible for both programs. Disability benefits are also available for children who have severe impairments and are intended to assist parents with the cost of caring for a child with disabilities. For the purpose of this chapter, we limit our scope to adult SSI and SSDI programs, which cover the majority of cancer patients.

SSA’s Definition of Disability
All jurisdictions use the same federal criteria and laws for determining disability eligibility for SSDI and SSI. One of the first starting points of any Social Security Application is the definition of disability. Disability is:

“the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months [17].”

Practically, there are many regulations and rules that govern the application of the definition of disability in each individual’s case. The complicated nuances of this process are a major contributor to the fact that only 34% of initial adult applicants receive disability benefits [18]. However, the overall framework can be reduced to five sequential steps.
The Five-Step Sequential Evaluation Process
SSA uses a five-step process to determine if a claimant is too disabled to work [19]. The five-step process as applied to cancer patients is broken down in Table 11.1.
Table 11.1

The five-step disability process applied to cancer patients

1. Is the person currently working?

The initial step is to determine if the applicant is working. Step 1 can cause challenges for many cancer patients since a diagnosis does not preclude the ability to work. However, patients can still be eligible for benefits if they show that their disability-related work expenses ultimately put their income below a certain threshold [20].

2. Is the medical condition “severe” and likely to prevent work for at least 12 months?

In this step SSA considers the severity of your impairments and how they impact functional work activities such as standing, sitting, laying, and bending. Most applicants, including cancer patients, will not fail at this step so long as they have sufficient medical evidence of their disability.

3. Does the diagnosis(s) meet or medically equal the qualifications under SSA’s disability listings?

The third step is to see if the patient’s medical condition satisfies a particular disability listing on SSA’s list of disabilities [21]. If a listing is met, the person is automatically deemed to satisfy the definition of eligibility, and the rest of their application will depend on non-disability requirements. One of SSA’s disability categories includes “malignant neoplastic diseases.” In that category there are 14 types of cancer diagnoses that qualify.

4. Can the person do past work?

If a patient does not satisfy one of the step 3 listings, SSA will then assess whether the individual can perform any of their past work dating back 15 years. This step can require an applicant to fill out a “residual functional capacity assessment” and meet with an independent medical reviewer. Many cancer patients will not meet a listing in step 3 and will therefore be asked to complete the documents associated with step 4.

5. Can the person do any other type of work?

If an individual is assessed as not being able to perform any of their previous work in step 4, SSA will then consider if they can perform any work in the general economy. This will depend heavily on the proof of the patient’s functional limitations as well as the patient’s age and education. For cancer patients, this step will again depend on the robustness of their medical documentation.

Critical Cases

The process of applying for SSI and SSDI benefits can be quite lengthy, with cases often taking up to 2 years to reach a final decision. For many cancer patients, waiting 2 years for a necessary income source is simply not an option. Fortunately, there are several circumstances in which the SSA will expedite an application. These are called “critical cases” [22]. The three most relevant to cancer patients are terminal diagnoses (TERI cases), compassionate allowance (CAL), and dire need.

Terminal Illness: TERI
The SSA will expedite claims based on a terminal illness [23]. Terminal illness means the impairment cannot be reversed and is expected to end in death. Social Security will prioritize these cases and strive to expedite them every step. For cancer patients, the relevant TERI indicators are shown in Table 11.2. While these indicators do not guarantee eligibility, their presence does suggest to the SSA that the patient’s case needs expedited review.
Table 11.2

SSA indicators of terminal illness—cancer

Any malignant neoplasm (cancer) which is:

  • Metastatic (has spread)

  • Defined as stage IV

  • Persistent or recurrent following initial therapy

  • Inoperable or unresectable

  • Awaiting a heart, heart and lung, lung, liver, or bone marrow transplant (excludes kidney and corneal transplants)

An allegation or diagnosis of:

  • Cancer of the esophagus

  • Cancer of the liver

  • Cancer of the pancreas

  • Cancer of the gallbladder

  • Mesothelioma

  • Small cell or oat cell lung cancer

  • Cancer of the brain

  • Acute myelogenous leukemia (AML) or acute lymphocytic leukemia (ALL)

Compassionate Allowances

Some medical conditions may qualify for what the SSA calls a “compassionate allowance ” (CAL) [24]. CAL conditions are severe enough that they are very likely to be approved under the SSA’s Listing of Impairments (step 3 in the five-step disability process). For many of the CAL conditions, SSA will only require minimal objective medical evidence and will sometimes grant approval on the diagnosis alone. This makes it easier to approve claims quickly, sometimes in as little as 10 days. There are currently 165 CAL conditions currently recognized by the SSA. Examples of some of the cancer diagnoses that qualify as a CAL include certain types of bladder cancer, breast cancer, pancreatic cancer, ovarian cancer, and esophageal cancer.

Dire Need

Unlike TERI and CAL cases, dire need cases are based on the patient’s financial need [25]. If a claimant does not have the resources to get food, medicine, or shelter, the SSA will treat the claim as a dire need case and will expedite the application process. Expediting a dire need case still requires the individual to satisfy the definition of disability. Nevertheless, this designation can shorten application wait times and allow patients to obtain much-needed income.

Working While Disabled or Returning to Work
In certain circumstances, a cancer patient who is getting social security disability benefits has the option to try to return to work and retain their benefits for a period of time [26]. A person who attempts to work may continue to receive up to 4 years of support and services involving cash payments and/or healthcare coverage. Table 11.3 is a summary of some of the potential work benefits that SSI/SSDI recipients may be eligible for:
Table 11.3

Working while disabled—continuation of benefits

Nine months of trial work, called a “trial work period” (TWP) (not necessarily consecutive) during which a person may continue to receive benefits regardless of the amount of earnings

Continuation of Medicare for at least 39 months after the trial work period

A 36-month extended period of eligibility following the end of the 9-month TWP during which benefits may be paid for any month if earnings fall below the SGA level

Deduction from gross earnings of impairment-related work expenses in deciding if earnings constitute SGA. These include wheelchairs and seeing-eye dogs

Continuation of monthly payments and insurance coverage for a person whose impairment has shown medical improvement related to the ability to work so long as the person is participating in an approved vocational rehabilitation program that is expected to result in allowing the individual to work and become self-supporting

If a patient is able to fully return to work but becomes disabled again within 5 years after a previous period of disability, he or she will not have to serve a new 5-month waiting period before disability benefits may resume. In addition, if the person was previously entitled to Medicare, that coverage will resume immediately.

Appeal

If an applicant is denied, SSA is required to give clear and timely notice explaining the reason for the denial and how to request an appeal of the decision [27]. In order to file an appeal , a claimant must make the request in writing within 60 days from the date they receive the letter. SSA assumes receipt 5 days after the date on the letter, unless the applicant can show they received it later.

During an appeal, SSA will reconsider the entire initial decision, including all of the submitted evidence. Applicants will have the opportunity to submit new evidence and medical records as well as appear before an administrative law judge to argue their case in person. If the judge determines that the initial decision was wrong, they can reverse that decision and award any back benefits. Unfortunately, standard appeal times can be as long as 1–2 years. Although these times can be expedited using the critical case circumstances discussed above (TERI, CAL, dire need), there will inevitably be processing delays, which is why it is important that MLPs try to ensure that a patient’s initial application is as strong as it can be.

SSI/SSDI Advocacy Tips

SSA’s requirement that a patient’s condition be “medically determinable” highlights how a cancer patient’s successful disability benefit application often relies on effective coordination between MLP team members. When a person is diagnosed with a condition that meets one of SSA’s disability listings, their chances of obtaining benefits increase if the MLP team is able to quickly identify the qualifying condition and work together to translate the relevant medical data into useful evidence. Letters from healthcare providers drafted with the assistance of attorneys can prevent the long delays of the appeal process. Furthermore, training by legal providers on the basics of SSI and SSDI allows healthcare providers to understand the importance of recording their notes from a functional perspective. Providers should ask themselves: In what way does the diagnosis currently impact my patient’s abilities to perform work-related activities such as sitting, walking, lifting, concentrating, speaking, or remembering?

Medicaid

Since its initial enactment in 1965 as a humble program designed to provide medical assistance to individuals and families receiving cash assistance, Medicaid has grown to become the largest single insurer in the United States, providing coverage to 70 million individuals, accounting for one in five Americans [28]. The most recent growth came with the implementation of the Patient Protection and Affordable Care Act (ACA), which allowed states to expand Medicaid coverage to individuals earning 138% of the Federal Poverty Level (FPL) [29]. Of the newly expanded population, approximately 160,000 are believed to have an ongoing cancer diagnosis, although that figure is likely underestimated [30].

Medicaid Administration

Medicaid is funded through a partnership between the federal and state governments that requires states to put money towards the cost of their Medicaid programs and in return receive a matching percentage of the total dollars spent from the federal government [31]. While states are required to provide certain basic services to all members, they maintain a large degree of latitude in the administration of their individual Medicaid programs. As a result, there are fundamental differences between states as to the services and delivery systems they employ.

Categories of Coverage: Breast and Cervical Cancer and Medicaid Buy-In

Federal law requires that all states with a Medicaid program provide coverage to a list of mandatory coverage populations, such as low-income family, qualified pregnant women and children, and individuals receiving SSI [32]. States can also choose to provide coverage to other optional categories, one of which targets women who need treatment for breast or cervical cancer [33]. This category was created by Congress in 2000 under the Breast and Cervical Cancer Prevention and Treatment Act (BCCPTA) [34]. It allows states to provide full Medicaid coverage to uninsured women, regardless of income or resources, who screen positive for breast and cervical cancer under the Center for Disease Control’s National Breast and Cervical Cancer Early Detection Program [35]. By 2009, every state had an established BCCPTA program [36]. Assisting patients and providers in navigating a state’s BCCPTA program is a great opportunity for MLP attorneys to augment access to care.

Another important category of coverage for cancer patients is the optional Medicaid buy-in program. This program allows employed individuals with disabilities to retain their Medicaid coverage by raising the standard income and resource requirements and requiring individuals to pay small income-based premiums [37]. For cancer patients, Medicaid buy-in is an opportunity to retain necessary employment income and medical coverage while receiving treatment. However, many states require individuals to submit regular proofs of employment and disability status for continued eligibility. To address this, MLPs can help patients draft a letter clearly explaining the patient’s illness, symptoms, and expected length of the treatment.

Eligibility Requirements

Medicaid is an “entitlement” program, which means that anyone that satisfies its eligibility requirements is guaranteed to receive benefits. Eligibility for Medicaid is based on financial factors, such as income and resources, and nonfinancial factors, such as state residency and immigration status [38]. Each state is able to set certain income and resource limits for the covered populations within federal guidelines [39].

Income eligibility is determined using the “Modified Adjusted Gross Income” (MAGI) guidelines [40]. A person’s MAGI is set through a three-step process: (1) their total gross income is established, (2) their adjusted gross income is calculated by subtracting tax deductions from their gross income, and (3) their MAGI is set by adding back certain deductions to their adjusted gross income. With respect to resources, states have the freedom to set resource requirements and guidelines for certain categories. For example, Medicaid buy-in programs often have resource requirements. With the passage of the ACA, many of the resource limits that previously stood as a barrier to eligibility were eliminated. Regarding nonfinancial eligibility factors, the most relevant for many cancer patients is immigration status. This is discussed in greater detail in the “Legal Status” portion of this chapter.

Medicaid Appeals
The Medicaid Act requires states to provide a “fair hearing” for patients who have been denied eligibility or services, or who suffer from unreasonable delays [41]. More broadly, when the government takes an action that could potentially harm an individual and the reason for that action is based on a finding of fact, then “the evidence used to prove the Government’s case must be disclosed to the individual so that he has an opportunity to show that it is untrue” [42]. Medicaid enrollees have several constitutional rights when states try to deny, reduce, or terminate Medicaid coverage or services [43]:
  1. 1.

    A meaningful notice stating the basis for the action and, when coverage is to be reduced or terminated, a pre-termination notice informing the claimant of the right to continue benefits pending a final administrative decision

     
  2. 2.

    The opportunity for a “fair hearing” during which the claimant can confront and cross-examine the witnesses and evidence relied on by the agency

     
  3. 3.

    The right of the claimant to be represented by counsel

     
  4. 4.

    An impartial decision maker

     
  5. 5.

    A reasoned decision, based solely on evidence adduced at the hearing

     

These are the foundational legal principles that MLP attorneys rely on when advocating with state Medicaid agencies. While legal in nature, these principles are not limited to an attorney’s scope of practice, and are equally useful to any patient or advocate.

Medicaid Advocacy Tips

Assisting cancer practices with Medicaid applications and eligibility requirements is often an essential component of an integrated cancer MLP. MLP attorneys can intervene with states to ensure that applications are processed in a timely, accurate, and legal fashion. With the healthcare providers’ assistance, MLP attorneys can also challenge unfavorable eligibility determinations or treatment denials. In order to succeed in these functions, MLPs should develop procedures that allow providers to directly refer lapses in coverage or services to their legal partner. Many of these lapses can be prevented through periodic training of healthcare staff on the basics of Medicaid eligibility, application process, and coverage appeals. This “upstream” mentality can prevent damaging delays in patient treatment and mitigate patients’ stress around continued coverage.

Medicare

Medicare is a federally funded and administered health insurance program that provides health insurance coverage to individuals aged 65 and older, to the disabled, and to those with end-stage renal disease and amyotrophic lateral sclerosis. It was established in 1965 under Title XVIII of the Social Security Act as a way to provide insurance to people aged 65 and older regardless of income or medical history [44]. In 1972 it was expanded to include people under age 65 with physical and mental disabilities eligible for SSDI payments and people with end-stage renal disease [45]. Since its introduction, it has grown to cover more than 56 million beneficiaries [46].

Although Medicare is a government-subsidized program, maintaining coverage often requires significant out-of-pocket (OOP) expenses . For cancer patients, these costs rise significantly throughout the course of treatment and beyond. A recent study assessing the OOP costs of cancer patients on Medicare found that patients with no supplemental or secondary insurance could expect to pay an average of $8115 a year [47]. This expense amounted to nearly 24% of their income. Some individuals in the study paid up to 63%. Even those with “Medigap” supplementary coverage and those on Medicare Advantage plans paid an average of $5500–$6000 in annual OOP costs. “Dual eligibles,” who are low-income individuals eligible for both Medicare and Medicaid, still paid an average of $2116.

For low-income cancer patients, OOP costs represent one of the largest barriers to better health and increased quality life. The OOP costs are, in large part, a result of the structure of Medicare and how it pays for medical services. By understanding this structure, MLP teams can work together to limit debilitating OOP costs.

Medicare Coverage as Applied to Cancer Patients

The coverage provided by Medicare is generally separated into four “parts” along with supplemental coverage through Medigap plans. Each part covers a unique set of services:

Part A: Hospital Insurance Program . Part A covers hospital care, skilled nursing facility care, nursing home care, hospice, and home health services [48]. With respect to cancer patients, Part A covers the expenses of inpatient stays and services, including inpatient chemotherapy and surgery. Generally, beneficiaries do not have to pay premiums for Part A services so long as they paid sufficient payroll taxes throughout their lifetimes (roughly 10 years of full-time work) [49]. However, beneficiaries are responsible for an annual deductible and coinsurance for time spent in the hospital outside of the “hospital benefit period.” Part A coverage is automatically provided when a beneficiary enrolls in Medicare.

Part B: Supplementary Medical Insurance Program . Part B provides broad outpatient coverage for a range of services including, but not limited to, doctor visits, home health care, medical equipment, diagnostic procedures, and preventative care [50]. For cancer patients, Part B is responsible for outpatient visits as well as certain chemotherapy medications including intravenous and oral medications provided in an outpatient setting [51]. Part B has monthly premiums, an annual deductible ($183 in 2017), and an 80/20% insurer-patient coinsurance after deductible [52]. The 80/20% split means that Medicare patients are responsible for 20% of all costs of Part B coverage after paying an initial deductible. Furthermore, although Part B is technically voluntary, it is strongly recommended that beneficiaries enroll into it when they become eligible for Medicare unless they remain covered through an employer’s insurance. There are significant penalties for late enrollment.

Part C: Medicare Advantage (MA) Program . MA Plans are healthcare plans that are run by private managed care companies that receive a fixed amount per beneficiary from the federal government to oversee beneficiaries’ health care [53]. These plans are required to meet minimum federal guidelines and usually include at least Part A and Part B services as well as Part D drug coverage. Beyond the minimum federal requirements, Part C plans are free to structure services into various products to meet the needs of their beneficiaries in an effective and efficient fashion. The variety in plan type is matched by a variety in patient costs, which can include monthly premiums, deductibles, copayments, and coinsurance. Generally, Medicare Advantage plans charge the Part B premium as well as an additional premium paid directly to the plan.

Part D: Outpatient Prescription Drug Benefit . Part D plans cover outpatient prescription drugs and are offered by federally regulated private insurance companies. For cancer patients, Part D generally covers chemotherapy and anti-nausea drugs that cannot otherwise be provided intravenously [51]. The costs for prescription drug plans vary, but nearly all include monthly premiums as well as various coinsurance rates, including increased coinsurance during the “donut hole” in coverage [54]. Although the ACA has implemented measures to reduce the donut hole’s impact and will eliminate it altogether by 2020, currently it still remains a significant source of OOP costs [55]. Individuals are eligible for Part D prescription drug coverage if they are enrolled in Part A, Part B, or both.

Medigap: Medicare Supplemental Insurance . Medigap policies are not a “part” of traditional Medicare but are instead plans offered through private companies to help pay some of the costs that traditional Medicare does not cover [56]. These costs include copayments, coinsurance, and deductibles. They can also offer extended service coverage outside of the scope of the traditional Medicare. Medigap plans differ from MA plans in that they are purely a supplement to full coverage, whereas MA plans are a way to obtain full Medicare coverage.

Medicare Advocacy Tips

For cancer patients on Medicare, a large portion of their OOP costs will come from the expenses associated with prescription drug coverage under Parts B and D. The combination of Part B’s 80/20% coinsurance and Part D’s donut hole in coverage in addition to other copayments and deductibles can create serious financial hardships for cancer patients. Those patients that cannot afford their prescription drugs should be guided to seek “Extra Help.” “Extra Help ” is a program offered through the SSA that assists individuals who have low resources with their Medicare prescription drug costs [57]. Advocates should also check to see if a patient’s low-income status makes them “dual eligible” for both Medicare and Medicaid. Although Medicare is the primary payer for most beneficiaries, supplementary Medicaid coverage will significantly decrease OOP costs.

If patients do not enroll into Medicare during their Initial Enrollment Period (IEP), then they run the risk of incurring significant late enrollment penalties and potentially complicating their supplemental Medicaid coverage. MLP teams should implement systems that help patients enroll in Medicare and, if needed, help patients seek “equitable relief” if there are any errors caused by Medicare in the enrollment process. In the context of Medicare, equitable relief is a request made to the federal government to correct or eliminate the effects of an “error, misrepresentation, or inaction” by federal employees [58]. It allows MLP team members to argue on the patients’ behalf and correct any administrative errors.

Private Insurance

The ability to understand the particulars of health coverage and advocate for timely, affordable, and clinically appropriate treatment is a challenge for many cancer patients. Further complicating matters are the differences between the various types of private insurance available to patients (group plans, individual plans, union plans, plans from federal and state health exchanges, etc.) as well as the patchwork of state laws that regulate them. However, there are general rights and protections available to nearly all patients on private insurance. These protections are most effective when they are combined with an interdisciplinary MLP care team.

Protections Under the Affordable Care Act

As a result of the ACA , insurers are barred from refusing to sell or renew health insurance coverage on the basis of a patient’s health status [59]. This is called “guaranteed issue.” Insurers are also barred from implementing annual or lifetime limits on medical costs. In addition, many insurers can no longer refuse coverage of preexisting conditions.

Plans that are sold on the individual and small group markets must include a list of ten “Essential Health Benefits,” which create a minimum floor of coverage services. These services include outpatient and emergency services, prescriptions, hospitalization, mental health and preventive care, and more. Although there are ongoing efforts to repeal and replace the ACA, the current political landscape suggests that many of these protections may remain in place.

Private Insurance Advocacy Tips: Protections Against Denied Services
Similar to Medicare and Medicaid, cancer patients that are denied care by their private insurer are often told that the requested treatment does not satisfy the plan’s definition of “medical necessity” (Table 11.4). While each plan is free to define the term in their own unique fashion, medical necessity can generally be understood as the following.
Table 11.4

Definition of medical necessity

Medical necessity is often seen as healthcare services that a physician exercising prudent clinical judgment would provide to a patient for the purpose of evaluating, diagnosing, or treating an illness, injury, disease, or its symptoms, and that are:

  • In accordance with the generally accepted standards of medical practice

  • Clinically appropriate, in terms of type, frequency, extent, site, and duration, and considered effective for the patient’s illness, injury, or disease

  • Not primarily for the convenience of the patient of physician, and not more costly than an alternative service or sequence of service at least as likely to produce equivalent therapeutic or diagnostic results as to the diagnosis or treatment of that patient’s illness, injury, or disease

For these purposes, “generally accepted standards of medical practice” means:

  • Standards that are based on credible scientific evidence published in peer-reviewed medical literature generally recognized by the relevant medical community

  • Physician specialty society recommendations

  • The views of physicians practicing in the relevant clinical area

  • Any other relevant factors

  • Preventative care may be medically necessary but coverage for medically necessary preventative care is governed by terms of the applicable plan documents.

Providers should frame any initial engagement with an insurance company using the concepts in the definition of medical necessity. They should rely on their clinical judgment and use objective guidelines and evidence wherever possible. MLP attorneys can assist providers to better hone their arguments in light of the insurer’s particular definition of the term.

If the matter cannot be resolved by speaking with the insurance company, patients retain the right to file an appeal directly to their insurance company. As a result of protections passed by the ACA, the insurance company must conduct a full and fair review of its decision. If the case is urgent, the insurance company must speed up this process. MLP attorneys can draft the appeal and work with providers to craft an argument on the patient’s behalf. Table 11.5 highlights some of the relevant medical and legal questions that need to be answered before filing an effective service denial appeal.
Table 11.5

Important information for insurer treatment appeals

Medical information

Legal information

What is the patient’s diagnosis, prognosis, and current symptoms?

What is the date of the denial and the date that the patient received the denial?

What will happen if the patient does not obtain care?

What level of appeal is being filed (first, second, external review)?

What medical documentation exists (letters from providers, imaging, charts, etc.)?

What is the deadline for filing the appeal/review?

Has a peer review been conducted? If so, has any documentation been provided?

What are the elements of the plan’s definition of medical necessity?

Is this experimental/investigational treatment? If so, is there any data to support it yet?

What parts of the denial need to be challenged/disproven?

Is there medical support showing that the recommended course of treatment is necessary given the patient’s circumstances?

What are the relevant state law protections?

If the insurance company denies the appeal, then the patient has the right to request an external review, which is an outside, objective, and independent panel. The members of the panel can have no financial relationship to the insurer and therefore should have no bias in making a decision. If the external reviewer overturns the insurer’s denial, the insurer must give the patient the payments or services requested.

Medical and Consumer Debt

A cancer diagnosis can be exceedingly expensive for any patient and can become prohibitively so for many low-income individuals. When compared to other healthcare costs, cancer costs are increasing two to three times faster, and are projected to continue increasing [60]. The average out-of-pocket expenses for an individual are $1107 in the first year of a cancer diagnosis and $747 annually thereafter [61]. These estimates do not take into account the consequences of lost income for patients and their caregivers. Research has shown that about 30% of cancer patients report financial hardship and that they are 2.5 times more likely to enter bankruptcy than those without a history of cancer [62]. Cancer patients that file for bankruptcy are more likely to be younger, have lower annual household income, be unemployed, have public insurance, and have two or more cancer diagnoses [63].

The debt that cancer patients develop throughout the course of treatment can exist in several different forms. It can stem from unpaid medical bills; from unpaid mortgage, rent, or car bills; from unpaid credit card bills that were used as a temporary stopgap for other costs; from unpaid personal loans such as student loans; or even from unpaid utility bills. This myriad of possibilities highlights the underlying fact that cancer can completely disrupt an individual’s income stream and their subsequent ability to pay for their normal obligations.

Although it is difficult to rid a patient of the burden of debt entirely, there are interventions that MLP teams can use to help abate some common debt-related issues. First, the MLP team should focus on reestablishing a continuous stream of income, which can include assisting the patient with applications for public benefit programs such as cash assistance or SNAP benefits (food stamps), applications for disability coverage under the SSI and SSDI programs (discussed above), and assistance with obtaining short- and long-term disability through a patient’s employer.

Next, the team needs to determine the nature of the debts and rank them based on priority. Those costs associated with basic needs must be focused on first. This includes housing costs, food costs, and utility payments. MLP advocates should look into low-income utility payment programs through energy suppliers, which limit the amount that a supplier can charge qualified individuals. Furthermore, in many parts of the country that experience extreme seasonal temperatures, utility companies are often barred from turning off services during a specific range of months. With respect to housing costs, MLP lawyers can work to enter into adjusted payment terms with a bank or landlord. They can also represent clients in landlord-tenant hearings.

Once the patient’s priority debts and needs are stabilized, the team can then shift its attention to other debts such as credit card debts, medical bills, and student loans. An initial approach is to have the MLP lawyer negotiate lower payment terms with the patient’s debt collectors. This can delay more drastic actions like bankruptcy and create more time for further interventions. They can also leverage state and federal consumer protection laws, such as the Fair Debt Collection Practices Act (FDCPA), which is a federal law that protects consumers from abusive, coercive, and unfair debt collection practices [64]. The FDCPA covers the collection of mortgages, credit cards, medical debts, and other debts for personal, family, and household purposes [65]. MLP lawyers may be able to use the FDCPA’s protections to limit the frequency and time of day of collection calls, prevent collectors from contacting other family members regarding the debt, and perhaps even lower or discharge the debt if the collector does not adhere to the statute’s (and relevant state law’s) notice and collection requirements [66].

Housing

Low-income families frequently face chronic housing problems that have known health risks and legal remedies [67]. These include such risks as lead paint, unsafe housing conditions, and mold proliferation. In other healthcare contexts, MLPs have proven themselves effective at not only addressing individual housing-related needs, but also implementing systemic change in targeting at-risk neighborhoods and negligent landlords [68]. A cancer diagnosis, with all of its attendant costs, can further destabilize a low-income individual’s ability to maintain housing [69]. This, in turn, can cause lapses in treatment adherence and provider visits, as patients search for a new home. A diagnosis can also lead to discrimination in housing availability and accommodation. Due to the close ties between health, housing, and legal remedies, introducing legal providers into a cancer setting can be an effective way to directly impact low-income cancer patients’ overall health.

Tenant Protections

Patients that live in unsafe rental housing conditions often have a number of legal recourses available to them. They can contact their local code enforcement agency and ask for a housing inspection. This can lead to landlords receiving fines until they repair the property. They can also refer to the terms of their lease, which often outline the landlord’s responsibility to maintain the functional and structural components of the property. If they live in public housing, such as the section 8 voucher program run by the US Department of Housing and Urban Development, then they are protected by even more rigorous federal regulations and lease agreements [70]. Most jurisdictions also have laws that prevent landlords from retaliating against tenants that exercise their housing rights.

Another powerful protection available to almost all tenants is the implied warranty of habitability. This warranty requires landlords to maintain their properties in a habitable condition and is read into nearly all residential leases [71]. This means that leases cannot waive the implied warranty and tenants will always be able to bring legal action under the warranty against landlords that do not appropriately maintain the property. Exactly what is required of the landlord will differ by jurisdiction, but generally it requires the landlord to maintain the property according to local housing codes and in a condition that does not preclude the ability of the tenant to live in the property.

If a patient does face the threat of eviction, then most jurisdictions will require that their landlord provide the individual notice prior to any legal action. There will also be the opportunity to appear before a judge to hear the merits of the claim. Landlords are typically barred from preemptively evicting their tenants prior to the completion of the legal action. Some jurisdictions are pushing to instate right-to-attorney laws for eviction cases [72].

Fair Housing Act

The Fair Housing Act (FHA) was originally passed as Title VIII of the of the Civil Rights Act of 1968 and has since that time expanded to protect against the refusal to sell or rent a dwelling on the basis of race, color, religion, national origin, sex, or disability [73]. The act also prevents housing providers from refusing housing to persons with disabilities, or placing conditions on their residency, because they require reasonable accommodations for their disability [74]. The FHA therefore protects cancer patients seeking housing during or after treatment by preventing housing providers from refusing to rent or sell to the person simply because the provider is uncomfortable with that person’s diagnosis.

Another type of disability discrimination specifically prohibited by the Act is the “refusal to make reasonable accommodations in rules, policies, practices, or services when such accommodations are necessary to afford such person equal opportunity to use and enjoy a dwelling” [75]. Housing providers must do everything they can to assist the individual with the disability without fundamentally altering the housing program or creating an undue financial or administrative burden. Reasonable accommodations may be necessary at all stages of the housing process, including application, tenancy, or prevention of eviction. For cancer patients who have mobility issues, the right to reasonable accommodations is a strong consumer protection. For example, a housing provider would likely need to make a reasonable accommodation for a tenant with mobility impairment caused by their cancer if that tenant requested the provider to install grab bars in their shower.

Housing Advocacy Tips

Healthcare providers are essential allies in MLP attorneys’ attempts to protect cancer patients from health -harming housing conditions and discrimination. From a preventative perspective, patient conversations with healthcare providers can lead to identification of the early stages of income insecurity and landlord-tenant troubles, which can be addressed through legal intervention. Healthcare providers can also offer medically verifiable reasons for why a patient’s poor housing conditions are having a negative impact on their health, which allows MLP attorneys to better advocate with a patient’s housing provider to repair the issues or move them to a different unit. The same information can also help MLP attorneys utilize the protections of the FHA to acquire reasonable accommodations for a patient’s diagnosis or contest a refusal to rent or sell a property made on the basis of the patient’s diagnosis.

To accomplish these goals, MLPs should ensure that healthcare providers are asking patients about their housing status and should include questions on housing on any internal MLP referral tools. MLPs can also begin to track geographic areas and individual landlords that are more commonly associated with poor housing. This data collection can potentially lead to broader legal efforts that have a population-level impact on health.

Employment and Disability Issues

The ability to maintain steady employment or minimize employment-related stress is an important goal for many cancer patients. Unfortunately, when a person in the workplace is diagnosed with cancer, many unanticipated consequences can arise that threaten a patient’s ability to continue to work. These consequences may lead to an individual taking a large consecutive portion of time off from work or requesting an accommodation from their employer so that they can continue to work throughout treatment. They may also face discrimination stemming from their diagnosis such as demotion in seniority status or deliberately unfavorable working conditions. Federal, state, and local laws all address the rights and protections afforded to persons with a disability who are employed, seeking employment, or were unlawfully discharged from employment.

MLP advocates should understand how these laws apply to cancer patients and what role an MLP team can play in assisting patients with their cancer-related employment and disability issues. Below is an introduction to two of the most commonly cited sources of protection for workers with cancer: the Americans with Disabilities Act (ADA) and the Family Medical Leave Act (FMLA).

Americans with Disabilities Act

The primary federal law that protects the rights of individuals with disabilities is the Americans with Disabilities Act (ADA). The ADA was passed in 1990 in order “to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities” [76]. With respect to employment, the ADA prevents employers from discriminating against job applicants or employees on the basis of disability. This includes protections in a wide range of employer actions including recruitment, hiring, firing, promoting, and job assignments.

Since 2008, when Congress significantly expanded the definition of “disability” under the ADA, the majority of cancer patients have been protected by the law. The Equal Employment Opportunity Commission, which is the federal agency in charge of administering and enforcing the ADA, has even developed an in-depth Q&A for employers and employees about cancer in the workplace [77]. In it they state outright that cancer patients are very likely to be considered disabled under the law. They also point out that common discriminatory actions against cancer patients are founded in misperceptions of an individual’s ability to work with a cancer diagnosis.

In general, the ADA applies to an employee with a disability who, with or without reasonable accommodations, can perform the essential functions of their job [78]. A person can have a disability in one of the three ways: (1) they can have a physical or mental impairment that substantially limits a major life activity, (2) they can have a record of such an impairment (important for cancer patients in remission), or (3) they can be regarded as having an actual or a perceived impairment by an employer [79]. This means that a person cannot be discriminated against if they currently have a disability, if they have a history of disability, or simply if their employer believes that they have a disability, even if they do not.

The ADA also has certain employer requirements. It applies only to employers that are engaged in an “industry-affecting commerce” and have 15 or more employees for at least 20 weeks [78]. Fortunately, the term “industry-affecting commerce” is construed broadly and tends not to be an issue in ADA litigation [80].

Employees protected by the ADA are entitled to request a reasonable accommodation for their disability so long as they are able to do the essential functions of their job. There is no limitation or criteria on what the accommodation can be as long as it is “reasonable” for the employer to implement [78]. An accommodation is reasonable if it does not cause “an undue burden ” on the employer [78]. Generally, the accommodations cannot be unduly costly, extensive, substantial, and disruptive or fundamentally alter the nature or operation of the business.

Family Medical Leave Act

Another key employment-related protection available to many cancer patients is medical leave under the Family Medical Leave Act (FMLA). FMLA was passed in 1993 with the primary intention of providing pregnant woman protected medical leave for the birth of their child [81]. However, FMLA leave is not limited to pregnancy, and can be taken because of any “serious health condition” that makes the employee unable to perform the functions of their job [82]. A serious health condition includes an illness, injury, impairment, or physical or mental condition that involves inpatient care or continuing treatment by a healthcare provider [83]. Cancer treatment is specifically identified as a likely qualifying condition under federal regulations [84].

FMLA provides job preservation during 12 weeks of leave in a 12-month period for the same or equivalent position [85]. This leave can be taken intermittently if needed. It also requires employers to continue covering an employee’s health insurance coverage and other benefits. Not all employers are required to provide FMLA coverage to all of their employees. Coverage is only required if (1) the employer employs at least 50 workers within 75 miles of the worksite, (2) the employee worked for the employer for at least 12 months (need not be consecutive, but must occur before a 7-year break in service), and (3) the employee must have worked at least 1250 h in the previous 12 months [86].

If a cancer patient is covered under FMLA, they should speak with their human resources department to begin the process of applying for leave. The process can vary based on the internal policies of each employer and on the availability of paid leave through short- or long-term disability. However, most employees must go through some version of the following four steps: (1) notice must be given to the employer within 30 days if the leave is foreseeable [87]. If it is not foreseeable then the employee must give notice as soon as practicable. (2) After notice, the employer must notify the employee within five business days of the employee’s eligibility to take FMLA and must inform the worker what documentation is needed to proceed (e.g., medical certification). (3) If required, the employee submits the necessary forms, including medical certification. (4) The employer must then provide a designation notice that identifies the leave as qualifying for FMLA.

Employment-Related Advocacy Tips

Navigating the form-and-procedure heavy processes associated with the ADA and FMLA can be a daunting task. With an MLP attorney’s help, the necessary documentation, especially medical certification forms, can be collected quickly and more efficiently. Attorneys can also assist by directly advocating with the patient’s employer. For reasonable accommodations under the ADA, MLP lawyers can work with providers to craft letters that advocate for a patient’s continued ability to work [88]. These letters should identify the treating provider, identify the patient’s diagnosis, outline the symptoms or impairments that the diagnosis causes including symptoms from treatment, and request a specific reasonable accommodation in light of the foregoing. Examples of these accommodations include using didactic programs to avoid typing pain caused by neuropathy, being able to work remotely, sitting closer to a bathroom, being allowed to sit during shifts, having a more flexible attendance notification policy, and getting more time to complete projects. MLP lawyers can work directly with a patient’s employer and providers to facilitate the creation of these accommodations.

Legal Status

Legal status has a direct impact on the health of immigrant cancer patients by serving as a primary barrier to public benefits, including health coverage. Cancer providers should be aware of the basics of immigration law as it pertains to low-income cancer patients and how an MLP can help overcome immigration-related hurdles.

Basic Rights

Since the early twentieth century, the US Supreme Court has recognized that immigrants within America are entitled to due process under the US Constitution. The Fifth and Fourteenth Amendments provide all “persons” the protection from being deprived “of life, liberty, or property, without due process of law.” As articulated by the Supreme Court, even unlawful immigrants “have long been recognized as ‘persons’ guaranteed due process of law by the Fifth and Fourteenth Amendments” [89].

Due process under the US Constitution requires that immigrants be notified of the grounds for their removal, of their right to an attorney, and of their right to a fair hearing [90]. At that hearing the individual must be provided a reasonable opportunity to examine the evidence against them and to present evidence on their behalf. As a further protection, the Immigration Judge who oversees the hearing must inform immigrants of their eligibility for relief from deportation on such grounds as fear of ill treatment or hardship upon removal. If a judge orders an immigrant deported, the individual still has the right to appeal to the Board of Immigration Appeals as well as to federal court. In each stage of this process the individual must be informed of all of his rights in a language he or she understands or the deportation order will be considered invalid.

Benefit Access

Over the past several decades, Congress has made significant changes in immigration and welfare policy in order to restrict the eligibility of legal permanent residents (LPRs), refugees, asylees, and other noncitizens from accessing means-tested public aid [91]. In 1996, Congress passed the Personal Responsibility and Work Opportunity Reconciliation Action (PRWORA), which created many of these restrictions and continues to serve as the source of subsequent limiting amendments [92]. Generally, access to the benefits depends on an individual’s immigration status, whether they arrived (or were on a program’s rolls) before August 22, 1996 (when PRWORA was enacted), and how long they have lived and worked in the United States. Table 11.6 breaks down the eligibility of lawful and unlawful immigrants for six of the most important public benefits.
Table 11.6

Federal benefit access for various aliens

Class of alien

SNAP (food stamps

SSI

TANF (temporary assistance for needy families)

Medicaida

PPACA—exchange access

Lawful permanent alien (LPR, green card)

Ineligible for first 5 years from entry

Lf green card before August 1996

Ineligible for first 5 years from entry, then eligible based on state option

Ineligible for first 5 years from entry

Eligible

LPR with 10+ years of work history

Eligible

Eligible

Eligible

Eligible

Eligible

Humanitarian cases—asylees, refugees, special Iraqi and Afghan immigrants, etc.

Eligible after grant of status

Eligible for first 7 years after grant of status then ineligible unless naturalizes

Eligible for first 5 years then eligible at state option

Eligible for first 7 years after grant

Eligible

Trafficking victims

Eligible

Eligibility depends on class of status

Eligible if resident as of August 22, 1996. Ineligible for 5 years after entry, if entry is post-August 22, 1996. Otherwise eligible at state option

Eligible at state option

Eligible

Temporary protected status of extended voluntary departure

Eligible

Eligible for 7 years after entry/grant of such status. Ineligible after 7 years unless naturalized

Eligible for 5 years after entry. Eligible at state option after 5 years

Eligible for 7 years after entry. Eligible at state option after 7 years

Eligible

Nonimmigrant visa holders

Ineligible

Ineligible

Ineligible

Ineligible

Eligible

Undocumented immigrants

Ineligible

Ineligible

Ineligible

Ineligible (except emergency MA)

Eligible if meet state residency requirements

aStates may use their own funds to expand eligibility for Medicaid beyond what is allowed by federal law

Healthcare Benefits: Undocumented Immigrants

Undocumented immigrants who receive a cancer diagnosis are often faced with the challenge of not having meaningful access to healthcare services. With the exception of emergency medical care, undocumented immigrants are not eligible for federally funded public health insurance programs, including Medicare, Medicaid, and the Child Health Insurance Program (CHIP). Additionally, undocumented immigrants cannot purchase insurance through marketplaces created under the ACA [93]. Some states and local governments use their own funds to expand coverage to PRUCOL (Permanent Residence Under Color of Law) immigrants, which refers to individuals who are in the United States with the knowledge of immigration services and are not likely to be deported [94].

Emergency Medicaid is often the only source of medical coverage for undocumented immigrants. Generally, coverage under emergency Medicaid requires a “medical condition manifesting itself by acute symptoms of sufficient severity such that the absence of immediate medical attention could reasonably be expected to result in (1) placing the health of the individual … in serious jeopardy; (2) serious impairment to bodily functions; or (3) serious dysfunction of any bodily organ part” [95]. In practice, states often deny cancer patients that seek treatment through emergency Medicaid because their symptoms are not “acute” or because the length of their treatment regimens is undefined. For example, states usually cover the surgery and chemotherapy treatments associated with breast cancer, but are more hesitant to cover a 5-year prescription for tamoxifen.

Immigration Advocacy Tips

MLPs can be particularly helpful for immigrant patients when it comes to access to healthcare services, visa assistance for family caregivers or related donors seeking to visit the United States, explaining and assisting immigrants with “Know Your Rights” discussions, and representing immigrants in humanitarian or immigrant applications. Providers can support MLP attorneys by medical documentation for immigration cases, especially in situations where access to health coverage relies heavily on the severity of the diagnosis. However, access to translational services is paramount for an effective immigration referral, especially in situations where the patient is already wary of potential repercussions of accessing health care. Ideally, MLPs will translate any informational forms into the most common languages represented in their patient populations so as to ensure that immigrant patients have a clear sense of their privacy rights under relevant professional codes of conduct.

Advance Care Planning (Personal and Familial Stability)

Advance care planning (ACP) can broadly be understood as the framework that helps patients express their treatment goals and preferences so that those wishes can be protected and realized when patients are unable to make decisions for themselves. Many oncology patients believe that it is important to address end-of-life issues in the ACP process [96, 97]. Completing advance planning documents is an effective way to increase the likelihood that a patient’s wishes are adhered to in moments of incapacity [98, 99]. Although ACP is not unique to cancer patients, its prevalence in the population combined with its frequent reliance on legal documents makes it an ideal target for MLP intervention.

This section briefly summarizes five common types of advance planning documents that MLPs are well suited to assist with: the financial power of attorney (POA), the healthcare power of attorney (HCPOA), the living will, the will of estate, and the standby guardianship. While there are a variety of other documents that can be useful in the ACP process, such as do-not-resuscitate orders and physician orders for life-sustaining treatment, these five are inherently legal documents with statutorily defined execution requirements. As a result, familiarity with their legal underpinning is important for their effective use in a cancer setting.

Advance Care Planning Documents

The documents addressed below are intended to safeguard an individual’s ability to control the broader social, financial, and medical aspects of their lives regardless of their capacity status. While each of these documents plays a different role in the ACP process, all are grounded in the legal and bioethical principle of patient autonomy and individual decision-making [100]. Due to the state-specific laws governing the execution of these documents, it is advisable that providers become familiar with their own state’s requirements and, ideally, include a lawyer in their cancer care team [101]. With a lawyer’s assistance, these documents can be drafted properly while also guaranteeing their legal, and therefore enforceable, status.

Financial Power of Attorney

A power of attorney (POA) is a written document through which an individual (the principal) assigns another person (the agent) the concurrent authority (meaning both the principal and agent retain the power simultaneously) to make financial decisions on behalf of the principal [102]. POAs are only focused on financial matters and do not overlap with healthcare decisions. For cancer patients, a POA allows an agent to assist with common financial matters like paying for everyday expenses as well as negotiating with insurance companies or assisting with the sale of a home. POAs generally become active the moment they are signed, unless they are contingent upon the principal’s incapacity, in which case they are sometimes referred to as a “springing” power of attorney. The documents become void upon the death of the principal and therefore cannot be used as a substitute for a patient’s will.

Healthcare Power of Attorney

A healthcare power of attorney (HCPOA) is a written document through which an individual (the principal) gives another person (the agent) the authority to make healthcare decisions on the principal’s behalf [103]. Unlike financial POAs, which generally become active when they are signed, a typical HCPOA only becomes active when a principal becomes incapacitated and is unable to make their own healthcare decisions. This limitation stems from the fundamental role of patient autonomy in medical decision-making and the deference that is given to patients’ expressed wishes [104]. Furthermore, because the HCPOA applies in any circumstance of patient incapacity, regardless of severity, it encompasses a broader set of scenarios than a living will, which is exclusively intended for end of life. Like a POA, an agent’s powers are defined in the document, and can typically include powers like making treatment decisions, hiring or firing providers, and transitioning the patient onto hospice. Some states prefer a single-form HCPOA and living will, where the two documents are combined and work together [105]. In these circumstances the HCPOA portion identifies the agent and the broad decision-making powers while the living will portion outlines the patient’s end-of-life wishes. For cancer patients, a well-written HCPOA (along with a corresponding living will) is an essential component of effective ACP. They allow patients to ensure that their wishes regarding treatment will be honored even if they lose capacity. They also serve as a focal point for conversations regarding the principal’s underlying values and beliefs as they pertain to treatment decisions.

Living Will

A living will is a document that outlines a patient’s wishes with respect to end-of-life treatment [103]. The document can include preferences regarding specific treatment options, such as chemotherapy, radiation therapy, cardiopulmonary resuscitation, ventilator support, and provision of nutrition and hydration. Because it is often intended to work with a broader HCPOA, the document is not required to designate a proxy decision maker. However, these documents can operate on their own and, in those circumstances, should identify a proxy to carry out the patient’s expressed wishes.

Will of Estate

A will of estate (generally referred to as just a “will” or “final will”) is likely the most commonly known ACP tool. A will is intended to reflect a patient’s wishes with respect to their person, property, and assets upon their death. Although wills can be arranged to accomplish a number of goals in a variety of fashions and are governed almost exclusively by state law, they typically have some common basic elements. Most wills contain detailed instructions about the distribution and divestment of the individual’s property and assets and often include burial instructions. They also identify, in detail, who is to receive the patient’s property (“beneficiaries”) and who is to assist in carrying out the instructions of the will (“executor/executrix”).

Standby Guardianship

A standby guardianship is a document that allows cancer patients with minor children to appoint a caretaker for their children that would step in if the patient were to become incapacitated or pass away [106]. Some research suggests that parents with advanced cancer who have dependent children are more likely to be in denial of the terminal nature of their illness and more likely to choose treatment focused on life extension and not adequately prepare for their death [107]. Other studies have demonstrated that parents with metastatic cancer experience high rates of anxiety, panic, and depressive symptoms and that parenting concerns are correlated with these symptoms [107]. A standby guardianship can help ameliorate some of these issues. When executing these documents, it is important to check state law and determine if both parents, regardless of their connection to the child, must sign the document in order for it to be effective. States also differ on how to withdraw a standby guardianship, with some allowing revocation just in writing , while others requiring a court filing.

ACP Advocacy Tips

There are a number of practical tips associated with advocacy around planning documents. First, MLP advocates should review any planning documents obtained online or through other sources with relevant state laws. For example, the Five Wishes document, which is used widely throughout the United States, is only legal as an advance directive in 42 states [108]. Second, advance care planning documents are only as good as the individuals and institutions who know of their existence. If a cancer patient has an executed planning document, they should provide copies to all of their providers and agents and have a discussion about the document’s contents. Without knowledge of a document’s existence, a provider or an institution cannot be obligated to follow its instructions. Finally, effective January 1, 2017, the Centers for Medicare & Medicaid Services issued new Current Procedural Terminology codes that allow physicians to bill for advance planning conversations [109]. These codes should incentivize cancer providers to have ACP meetings with their patients. However, many cancer centers may not have staff with the expertise to discuss the breadth of legal issues that the documents entail. Integration of lawyers through an MLP can help fill this gap.

Case Vignettes

What follow are two case examples that highlight the impact that legal determinants of health can have on low-income cancer patients and how interdisciplinary MLP intervention can work to address those needs.

Carla

Carla is a 38-year-old single mother who lives with her two sons, ages six and eight, in a two-bedroom apartment that she rents for $1800 per month. She earns $40,000–$50,000 per year working as a part-time paralegal for a single attorney and as a freelance web designer. She received her bachelor’s degree 3 years ago. Based on her income and family size, she earns 200–250% of the Federal Poverty Level, which places her well above most government benefit programs. However, her children are eligible for insurance coverage under CHIP and she is covered through a plan on the individual marketplace for which she receives premium subsidies.

At some point Carla noticed a lump on her chest. A biopsy revealed that Carla had stage IIIA triple-negative breast cancer. After discussing her treatment options with her oncologists, she chose to pursue a lumpectomy followed by 4–6 weeks of radiation treatment and several months of chemotherapy.

Her treatment forced Carla to take an extended period of time off of work. The attorney for whom she worked was just beginning a long trial and had to hire a replacement. Carla could continue to work on websites from home, but her mental and physical ability to do that was diminishing. Since Carla had little savings, the loss in income severely jeopardized her ability to pay for her expenses, including her insurance premiums and her rent. She subsequently lost her health coverage and started receiving threatening letters from her landlord.

Shortly after she was diagnosed, Carla was referred by a social worker to Danielle, who is a legal aid attorney that provides free legal services through an MLP at the cancer center. When Carla lost her health coverage, Danielle was able to help her apply for Medicaid coverage under her state’s BCCPT program. Danielle was also able to work with Carla’s oncologist to prepare a tailored application for disability benefits. Danielle also participated in the family meeting arranged by Carla’s care team. One of the main results of that meeting was a set of advance care planning documents, including a HCPOA and a standby guardianship that appointed Carla’s sister the guardian of Carla’s children. Danielle also contacted Carla’s landlord. Danielle was able to leverage the landlord’s harassment of Carla into a grace period that allowed Carla to stay in the unit rent free for several months until she found a new apartment. As a result, Carla and her boys were able to move into a more affordable apartment. Following the first round of treatment, Carla’s cancer entered remission.

Unfortunately, 6 months after she entered remission, Carla’s cancer metastasized. In that time she was also told that her initial application for disability had been denied because the diagnosis did not sufficiently show that Carla would be unable to work for more than a year. Carla once again met with her care team and a new course of treatment was decided on. She submitted an appeal for the disability benefits, which Danielle was able to quickly expedite as a CAL case using medical records proving Carla’s diagnosis was stage IV cancer. The benefits started on the first day of the following month. Although Carla’s prognosis remained uncertain, with her MLP team’s assistance, she was able to start on a new treatment plan, stabilize her income insurance and income, and move to a new apartment. She also knows that regardless of what happens, her children will be taken care of and that her treatment wishes will be adhered to.

Rami

Rami is 28 years old and fled Nepal to the United States after the 2015 earthquake destroyed his village. His mother had a permanent resident status and was able to legally travel, but Rami had no legal documentation. For the past month, Rami has had flu-like symptoms and discovered bruises over his body. Since he was undocumented, he was afraid that if he saw a doctor he could be deported. Eventually, he went to the ER of a NY safety net hospital, where he was reassured that his privacy was protected under HIPAA. He was diagnosed with Ph + acute lymphoblastic leukemia and began standard combination chemotherapy and tyrosine kinase inhibitors (TKI) which was covered by NY Emergency Medicaid, but because of his immigration status he was not eligible for allogeneic hematopoietic stem cell transplantation (HSCT). Without the transplant, it was unlikely that he would survive the year. With his consent, his physician referred him to the MLP attorney.

The MLP attorney met Rami in the hospital and realized that Rami qualified for a Nepal Temporary Protected Status (TPS), which granted him temporary protection against deportation. As a result of the pending TPS application, Rami was eligible for NY State Medicaid as a PRUCOL immigrant. Since he was inpatient and could not go to the Medicaid office, the attorney helped him complete a financial power of attorney so his mother could apply for Medicaid on his behalf. Rami was transferred to the adjacent academic hospital for the transplant and enrolled in a clinical trial. Fortunately, a matching donor was found and Rami could undergo the procedure.

Several weeks later, his physician reached out to the attorney in a panic. Rami received a notice that he was losing his Medicaid coverage due to lack of immigration status. The attorney requested an expedited fair hearing with aid to continue to contest the termination of coverage. Since the request was made before the coverage stopped, Rami had no disruption in care while the hearing was pending. At the fair hearing, the attorney saw that proof of TPS was not in his file even though the caseworker note showed that it was submitted. She pointed out the agency error and resubmitted the proof of immigration status directly to the judge. The error was corrected and Rami received a fair hearing decision confirming that he was in fact eligible for coverage.

After several difficult months, Rami continued to improve. The cancer was in remission, and he was granted TPS with work authorization. He wanted to start working but worried he could lose health coverage if he was over income. Additionally, his mother wanted him to move with her to New Jersey where a person with TPS is not eligible for Medicaid. The attorney explored Rami’s options with him: If he stayed in New York then he could enroll in the Medicaid Buy-In Program for the Working Disabled. So long as he was working, this would allow him to maintain Medicaid with a low premium. If he moved to New Jersey he would lose Medicaid coverage but could purchase a plan on the individual marketplace.

Regardless of Rami’s decision, his health and well-being are directly tied to the interdisciplinary efforts of the MLP team. Without their coordination at critical moments, Rami’s access to coverage would have been in jeopardy and his life would have been at risk.

Conclusion

As cancer treatment continues to shift towards an ambulatory setting, oncology care will be required to contend with the broader social and environmental circumstances impacting patients’ lives. The services that MLP attorneys provide can aid not only with acute, emergency needs, but also with chronic and systemic issues. The MLP model is therefore uniquely situated to help augment the scope of patient care in order to address many of the short-term and long-term social determinants of patient health.

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Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Tomas Bednar
    • 1
  • Domna Antoniadis
    • 2
  1. 1.PhiladelphiaUSA
  2. 2.New York Legal Assistance GroupNew YorkUSA

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