How the ADA Affects Cancer Survivors

Vinh Nguyen, J.D., M.B.A.
Project Director, Southwest ADA Center at TIRR Memorial Hermann

The Southwest ADA Center is a non-profit group that educates the public to promote voluntary compliance with the Americans with Disabilities Act (ADA). We are one of ten ADA Centers that compose the ADA National Network. Each ADA Center provides trainings and technical assistance on the ADA for its respective region and collaborates together on several national projects. One of the most common questions we get from the public is whether an individual’s condition is covered or protected by the ADA. I meet many cancer survivors who do not consider themselves as having a disability and are surprised to learn that they have rights as a person with a disability.

The ADA generally prohibits discrimination on the basis of disability in employment, state and local government programs and services, and places of public accommodation. Under the ADA, workers must file a complaint with the Equal Employment Opportunity Commission (EEOC) before they can sue their employers. A study of EEOC complaints showed that workers with cancer experienced more workplace discrimination than the general disability population and the type of discrimination they experience is markedly different (McKenna et al., 2007). They were more likely to file complaints over being terminated and being treated differently at their employment. (Feurstein et al., 2007).

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Resilience: Weathering The Survivorship Vortex With Clients Living With Cancer

By Joseph Connors, Esq.
Professor Connors is the Director of Albany Law School’s Health Law Clinic, a medical legal collaborative supported in part by the New York State Department of Health, Cancer Support and Survivorship Initiatives

The recent sub-zero Polar Vortex inspires me to focus this month’s blog entry on something our clients here at Albany Law School’s Clinic & Justice Center know so well: Resilience.

Our second and third year law student Health Law Clinic interns work with individuals who are at various stages of surviving cancer. Each semester, before we meet our first clients, we discuss the importance of learning clients’ stories and developing action plans and advocacy narratives focused on both the client’s legal and non-legal needs.  Typically, identifying, appreciating the context of, and prioritizing clients multiple needs requires two to three client/student meetings, during which clients at some point share their feelings upon first receiving their diagnosis.  These shared stories have repeated themes: “Being hit by a ton of bricks!,” “Being blown away!” “Devastating!”

The closer the student/client advocacy relationship becomes, the more our interns come to appreciate the resilience of our clients in surviving the unpredictable and cold vortex of diagnosis. Their clients still often experience “more than bad” polar days with emotional distress, fears, and doubts.   But, somehow, they also adjust and move forward.  Many long term clients credit their success to the support of loving families, friends, and compassionate medical care teams.  Others point to their ability to stay focused on future goals, even in the face of cold winds of new complications and obstacles.  Side effects from medications. Health setbacks. Mounting unpaid bills due to loss of income. Lack of parenting energy. Too many forms to fill out for benefits.  Denials and bureaucracies. Whirlwinds of uncertainty about future health care, child care, and estate care planning. Discrimination when they return to work.

Law interns realize that they are not detached from their clients and often need to be resilient themselves.  They bring a different set of stressors with them.  Four hours of classes per day.  Another eight hours of studying. Moot court, law review, and student organizations.  Learning a new legal vocabulary. Being separated from family and old friends. New relationships. Fitting in. Worrying about finding a summer job.  Paying the rent. Networking for a long-term job.  Exams. And helping their clinic clients. These competing demands can be overwhelming.  Both law student and lawyers experience burnout and secondary trauma.

The optimistic hope remains in the lessons of our clients who are experts in persevering. We, like our clients, become more resilient, more able to weather the polar vortexes of adversity when we:  accept some stress and emotional pain as inevitable and embrace it; rely on the support of family and friends, and this growing advocacy network for help when necessary; break down overwhelming problems with specific action oriented goals; and continue to reflect on our experiences as a matter of healthy habit.  Happy 2014 to all!

Planning Documents for Cancer Patients

By Tom Bednar
Staff Attorney, Legal Clinic for the Disabled

Cancer can have wide-reaching impact on a patient’s physical and cognitive functions well before the body is introduced to the incredibly draining courses of chemotherapy or radiation therapy. In fact, as many readers of this blog are likely well aware, the negative effects of chemotherapy on a person’s attention, focus and memory have been appropriately named “Chemo Brain.” These side effects can seriously inhibit a cancer patient’s ability to clearly formulate their preferences and to express them in a coherent fashion. Therefore, cancer patients should take the time to begin talking about advance planning and planning documents early in their diagnosis.

It is an established principle in our country that a patient has the right to choose the course of their medical treatment. However, this respect for autonomy and individual control in times of illness isn’t just limited to a patient’s decisions about their treatment. An ill patient should also have the opportunity to control their non-medical affairs through the course of their illness. One of the best ways for patients to accomplish this is to create advance planning documents that serve as a recording of their wishes and also allow for the appointment of agents to stand in for the patients when they are unable to act on their own behalves. These documents can take many forms and address various portions of patients’ lives.  Their flexibility and attention to detail can create a small amount of peace of mind in an otherwise troubling time.

Despite the fact that we believe that patients should have the opportunity to create such documents and record their wishes, the effective utilization of advance care planning and planning documents is still lacking. In studies outlined by the Agency for Healthcare Research and Quality less than 50 percent of the severely or terminally ill patients studied had an advance directive. Even in situations where an advance directive was created, between 65 and 76 percent of physicians were not aware that such a directive existed. Another study has shown that many physicians and care providers continue to be uncomfortable discussing end-of-life planning matters and prefer to defer such conversations to ER staff and palliative care specialists. Nevertheless, medical providers’ specialized knowledge about a cancer patient’s medical condition is invaluable for the patient’s ability to form informed decisions and preferences.

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Workplace Wellness Programs – A Trojan Horse in the Affordable Care Act

By: Laura Riley
Staff Attorney,Cancer Legal Resource Center

Workplace wellness programs are employer-offered programs that aim to encourage healthy behaviors and prevent health conditions or worsening of health conditions.

There are two types of wellness programs – participatory and health-contingent.  Participatory wellness programs offer no reward or do not require an individual to meet a certain goal in order to receive the reward.  A free gym membership that is not conditioned on going to the gym or losing weight is an example of a participatory wellness program. Health contingent wellness programs are ones in which an employee must meet a health-related standard or goal in order to receive a reward.  For example, employees pay lower health insurance premiums if they reach a target cholesterol goal.

Wellness programs that give a reward for meeting a health target, or alternatively a penalty for failing to meet one, potentially discriminate against employees with cancer who may not be able to meet a health goal due to their condition.  An employee on a course of chemotherapy may not be able participate in an exercise program designed to lower heart rate due to the effects of treatment.
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A Personal Perspective on BRCA Testing

By Helene Schonbrun
Attorney Extern, LegalHealth Division of NYLAG

Just a few weeks before the publication of Angelina Jolie’s eloquent announcement and the decision of the Supreme Court in the case of Association for Molecular Pathology v. Myriad, I sat in the exam room during my semi-annual checkup talking with my oncologist about developments in breast cancer genetics.  That discussion led me, nearly four-and-a-half years after getting BRCA testing (and a negative finding), to take the elevator ride down one floor to the genetics counseling office to find out about a second BRCA test Myriad had developed, referred to as BART.  Unavailable at the time of my diagnosis, BART could look at my BRCA genes in a different way than they had been looked at before, posing the possibility that a mutation that had gone unnoticed previously could now be picked up.  Continue reading

Genetic Rights in the Spotlight

By: Anya Prince
Staff Attorney, Cancer Legal Resource Center

From the announcement that Angelina Jolie opted for a prophylactic mastectomy, to the recent Supreme Court decision invalidating some of Myriad’s patents on the BRCA gene, genetic testing has entered the spotlight.

Approximately 5-10% of cancer is hereditary in nature; meaning that a person has inherited a genetic mutation which increases the risk of getting cancer.  In some situations, a genetic test is available to determine whether a person has inherited the familial mutation – such as BRCA testing for breast and ovarian cancer and HPNCC testing for colon cancer.

Genetic testing is not for everybody.  Individuals can determine whether medical testing is medically right for them by examining risk factors such as family history, age of cancer diagnosis, and certain ethnic backgrounds. Generally, the first step for somebody who is considering genetic testing is to go to a genetic counselor.  The counselor and the patient can then determine who in the family, if anybody, should consider testing, and what preventive measures a person may want to take if the results come back positive.  Prophylactic surgery, the preventive surgery that Angelina Jolie had, and increased cancer screenings are common preventive steps that those with genetic predispositions take to mitigate their cancer risk.

At the Cancer Legal Resource Center (CLRC) we hear from individuals who are facing legal barriers and difficulties accessing genetic testing and preventive services   Some common barriers include lack of insurance coverage, high costs, and concerns about genetic discrimination.  Continue reading

Why the NCLSN Needs a Blog

Who are we?

The National Cancer Legal Services Network (NCLSN) seeks to increase the availability of legal services on behalf of low-income individuals affected by cancer. The NCLSN advocates for the provision of comprehensive cancer legal services to help individuals resolve nonmedical issues so that they may focus on their health and well-being. These issues include: insurance disputes, public benefits, housing, employment issues, future care and custody planning for children, immigration, estate planning and advance directives.

Included in the NCLSN membership are private law firms, non-profit legal aid organizations, medical-legal partnerships, bar associations, cancer support organizations, individual attorneys, social workers, and patient navigator programs. There are over 45 groups that are members of the NCLSN.

Why a Blog?

There is a lack of central documentation regarding oncology-focused legal services and the unique legal needs of families and individuals affected by cancer.  Creating a blog will aid in publicizing the widespread benefits of cancer legal advocacy programs, explain the necessity for specialized legal services for cancer survivors, illustrate the various models of delivery of service, and recommend ways organizations can take advantage of, or help create, federal or state funding for more services.

We want to bring together the varied work of oncology-focused legal services programs across the country.  A place to share the unique needs and challenges of low-income families and individuals affected by cancer, the expansion of health insurance coverage for millions of Americans by the Affordable Care Act, and other substantive topics will be an invaluable resource. Through our conferences, calls and conversations we all noted how much information was out there and how helpful it would be to collect and publish it.

Members of our network will write on various topics related to oncology-focused legal services, such as changes in law and policy, advocating for state and national legislation, and sharing articles of interest. Stay tuned for more!