General Practice, Solo & Small Firm DivisionMagazine

Volume 15, Number 3
July/August 1999

An Introduction to AIDS Advocacy


Attorney David Cooper has learned almost everything he knows about helping clients with HIV through his pro bono work with the Whitman-Walker Clinic in Washington, D.C.

David works as a solo practitioner in a tax law practice, a specialty far removed from the insurance, public benefits, and discrimination cases he has handled for the past five years on behalf of HIV-positive clients.

"Although I knew nothing about AIDS law when I started, my skills as a lawyer transferred well to the wide range of advocacy I’ve since undertaken. This work is incredibly satisfying and the experience has made me a better attorney," he reports.

From the beginning of the AIDS epidemic in this country, lawyers like David Cooper at small firms and in solo practices have responded compassionately and in great numbers to the distinct legal needs of people living with HIV/AIDS. For the most part, they have assisted clients through pro bono work and on sliding-scale or contingency fee arrangements. By contributing their time and expertise, these lawyers not only have realized the intrinsic reward of helping people in need but also have built their client bases, reputations, and legal knowledge.

Hundreds of volunteer lawyers help the clients of the Whitman-Walker Clinic Legal Services Program. Founded in 1986, Whitman-Walker Clinic Legal Services is the oldest and largest nonprofit volunteer-based provider of legal services to people living with HIV/AIDS in the Washington, D.C., metropolitan area. Because of the program’s limited staff and budget, Whitman-Walker Clinic Legal Services is organized as a pro bono legal program. The program recruits, trains, and mentors several hundred volunteer lawyers to provide essential legal services to people with HIV-related legal problems who would not otherwise have access to legal representation. Clients receive counseling, advocacy, and representation free of charge.

Over the past 13 years, Whitman-Walker Clinic Legal Services staff have learned important lessons about working with clients with HIV/AIDS. We have also learned from our volunteers that lawyers in small and solo practices can make significant contributions in representing people with HIV-related legal needs.

What Is AIDS Law?

The seemingly exclusive term "AIDS law" is merely shorthand for the myriad legal complications that beset people already beleaguered by a life-threatening disease. Nearly ten years after the passage of the Americans with Disabilities Act (ADA), incidences of discrimination against HIV-positive people by employers, medical providers, landlords, and schools are still prevalent. For many people living with HIV, debt accumulates because of loss of income and the high cost of medical care and prescription drugs. Insurers raise daunting obstacles to obtaining both coverage and policy benefits. People with HIV/AIDS need planning documents such as a last will and testament and powers of attorney to maintain control of their personal affairs.

People with HIV also have special legal needs regarding the future care of their children, needs arising from breaches of confidentiality, and needs for representation in obtaining public benefits such as Social Security and Medicaid. They require representation arising from the harsh restrictions in the immigration laws that apply to people living with HIV.

Many practitioners already have expertise in important areas such as debtor/creditor law, discrimination law, trusts and estates, or Social Security law. Information about some of the particular ways in which these legal issues affect people with HIV and a review of case law that has developed with specific impact on people with HIV will generally put a lawyer in a good position to handle many of these legal matters. In some instances, however, it may be important to contact an organization such as Whitman-Walker Clinic Legal Services to discuss strategy for developing one of these cases. Discrimination, insurance, and other cases may ultimately impact the development of the law for all people, and therefore it is critical that practitioners carefully consider the ramifications of a case and seek guidance from an AIDS-related legal services provider if necessary.

A basic grounding in the medical and psychosocial aspects of HIV diseases is crucial for the lawyer dealing with a client’s HIV-related legal problems. For example, a lawyer assisting a client in an employment case cannot make effective arguments to help a client keep a job or obtain a reasonable accommodation if she does not understand the progression of HIV/AIDS, modes of transmission of the virus, or a client’s drug dosage and medical appointment needs. Lawyers should also know about the medical aspects of the disease when helping a client with insurance matters, some custody issues, medical malpractice, and other legal matters.

A Compelling Need

In spite of great advances in medical treatment that help people with HIV/AIDS to live longer, the epidemic continues to ravage individual lives, families, and whole communities. Across the country, an estimated 650,000 to 900,000 people live with the virus. HIV/AIDS increasingly affects women, with 22 percent of all adult and adolescent cases occurring in females. Sixty percent of new cases are among African-American women. Most of the newly infected people come from low-income backgrounds. Though Whitman-Walker Clinic Legal Services has no income eligibility guidelines for most of the services we provide, more than 80 percent of our clients are living at or below 200 percent of the federal poverty level.

HIV disease decreases a person’s ability to earn income. Treatment is expensive. Social Security disability income provides the sole source of income for many people living with AIDS, and people living on this extremely modest resource rarely have enough money to cover their expenses for medicine, medical bills, rent, food, utilities, and transportation. Faced with these financial burdens, many HIV-positive people cannot retain a lawyer without pro bono assistance or assistance on a sliding scale or contingency fee basis. Furthermore, many of the legal cases that arise for people living with HIV involve an issue of great significance. For example, the outcome may determine whether that person keeps his job or is able to continue to live in his home.

Key Issues in AIDS Advocacy

As knowledge of HIV disease expands and new situations are litigated, many areas of the law are changing rapidly. Fortunately, numerous AIDS advocacy organizations operate on the local and national level to provide technical assistance and co-counsel to lawyers working on HIV-related cases. Lawyers with clients who have novel or complex legal disputes should consider consulting with these organizations (see "Resources," page 36) to ensure that they receive necessary support and up-to-date information relevant to a particular case.

The vignettes below describe some of the common scenarios that we see in our legal clinic, and are accompanied by brief analyses of the legal issues involved. This information is not comprehensive but will give you, as a practitioner, a feel for the work.

ADA, reasonable accommodation, and disclosure of HIV. Mary has worked at ABC Consulting Company for three years as a research associate. She was diagnosed with HIV infection several months ago, after an extended illness that required her to miss several weeks of work. Mary was so upset when she received the HIV diagnosis that she called in sick for another week. Although she has recovered physically and now is back at work, she still feels very despondent and it has been difficult for her to concentrate on her projects. However, with the help of therapy and supportive friends, she feels like she is "coming out of her slump."

Mary’s doctor has recommended that she start "combination therapy," consisting of three different anti-HIV drugs, plus several additional drugs to prevent the occurrence of certain HIV-related "opportunistic infections." The medication regimen is complicated, requiring Mary to take pills before going to work, before lunch (on an empty stomach), immediately after lunch (on a full stomach), in the late afternoon (several pills before and several right after a snack), and in the evening. In addition, she needs to take time off from work for doctor’s visits and laboratory testing twice a month.

Mary has not told anyone at work about her HIV diagnosis. She is terrified of what will happen if her colleagues find out. She worries about being able to take time off for medical appointments, and about how the medications that her doctor wants to prescribe will affect her at work. Her boss already has expressed irritation over the amount of work that she missed several months ago, when she was sick and initially diagnosed. Mary says that there is a "workaholic" culture in her office; long hours are the norm, and she feels there is resentment when people are out, even for illness. Her boss has remarked that she seems preoccupied and that her work "hasn’t been up to snuff lately."

HIV-positive individuals have strong legal protections to prevent or redress disability discrimination. Federal laws include the ADA, which applies to public accommodations and all private employers with 15 or more employees, and the Rehabilitation Act, which provides protection from discrimination by federal employers. In addition, many states and localities have legal protections for people with disabilities.

The ADA protects individuals who have disabilities and those perceived to have disabilities ( see 42 U.S.C. § 12101 et seq.). The law prohibits discrimination by employers with regard to terms and conditions of employment against otherwise qualified persons with disabilities (§ 12112(a)). The ADA also requires that employers provide reasonable accommodations to employees with a covered disability who request such accommodation (§ 12112(b)(5)).

Mary has a right to reasonable accommodations to enable her to perform the essential functions of her job, as long as the accommodations do not amount to an undue burden on ABC Consulting (42 U.S.C. § 12112(b)(5)). Time off from work, either because of illness or for medical appointments, can be a reasonable accommodation. Mary may also be entitled to adjustments in her work schedule to accommodate her medication regimen, such as changes to her lunch hour and break times, and additional break time because of fatigue or other side effects of medication. If necessary, Mary may also be entitled to a reduction in her responsibilities or even reassignment to a different position if one is available and she is qualified for it ( see § 12112(9)).

Although ABC may have a "culture of workaholism," that does not mean that the accommodations that Mary may need are necessarily undue burdens on the company. What is reasonable for ABC to provide will depend on the essential functions of a research associate, on the number of research associates and the types of projects to which Mary is (or could be) assigned, on the size of the company, and on other factors ( see 42 U.S.C. § 1211(9)).

The dilemma for Mary is that under the ADA an employee with a covered disability is not entitled to an accommodation unless she requests one. This may mean that Mary, or her lawyer, will need to disclose to appropriate officials at ABC that she has HIV. The law is not clear on whether a disabled person under the ADA is required to disclose her medical diagnosis to obtain an accommodation. However, an employer is entitled to request sufficient information to support an employee’s claim that her condition is covered by the ADA and that the accommodations requested are necessary to enable her to perform her job. As a practical matter, this may require disclosure of HIV status ( see 29 C.F.R. Part 1630, App. Section 1630.9 (EEOC Interpretive Guidance on ADA Title I)).

If Mary and ABC are covered by the federal Family and Medical Leave Act (FMLA), she will be entitled to time off from work (up to 12 weeks in a year for a "serious medical condition"). The FMLA applies to employers who have 50 or more employees and to employees who have been employed at least 12 months by that employer and have worked at least 1,250 hours during the previous 12-month period ( see 29 U.S.C. § 2612 et seq.).

Under the FMLA, the employer can require that a request for leave be supported by a certification from a treating physician (29 U.S.C. § 2613(a)). The certification requirement presents an issue of concern for many clients because the physician must provide relevant medical facts about the condition. While information about a person’s HIV status creates a risk of stigma and discrimination, disclosure provides the only way Mary can exercise her right to statutory protections. The decision to disclose ultimately must be made by Mary.

While the FMLA does not have strict confidentiality standards for medical information, the ADA requires that this information must be kept confidential. This means that Mary’s manager or supervisor may be notified of any necessary restrictions or accommodations, but they cannot learn details of her health status ( see 42 U.S.C. 12112(c)(4)).

Debt. Anita owes $5,000 to various creditors and credit card companies. Due to HIV disease, Anita can no longer continue working. Her only source of income is $680 per month in Social Security Disability Income (SSDI) payments and she has no assets. Anita receives harassing phone calls and letters from creditors every day. She says that the stress of worrying about her creditors is having an effect on her already fragile health. She comes in seeking a lawyer to file bankruptcy to discharge her debts. Mostly she wants an end to harassment by her creditors.

While many clients believe that bankruptcy is the only solution to dealing with their significant debts, a lawyer can often help end creditor harassment short of this form of relief. If a client like Anita is too sick to work, has no attachable assets, and has no income or her only source of income is through disability income (such as SSI or SSDI), a lawyer can notify creditors by letter that the client is "judgment proof"; that is, the person’s income cannot be legally garnished and there are no assets that may be attached. While a "judgment proof" letter is not the same as a discharge in bankruptcy, creditors will usually cease collection efforts because they consider it a waste of time and money.

To prevent further harassment to the client, a "judgment proof" letter should direct the debt collectors to communicate directly with counsel and not with the client. After such notice, it becomes illegal under the Fair Debt Collection Practices Act (15 U.S.C. §1692a) to contact the client directly. Creditors found in violation of this part of the Fair Debt Collection Practices Act are liable for actual damages plus costs and attorney fees, and the court may award additional damages of $1,000 per individual act.

For clients who continue to work or have significant assets, a lawyer can work with the creditors to develop a manageable payment plan. If such a plan is unworkable, a client may have to file for bankruptcy. A good candidate for bankruptcy is a client with a large number of dischargeable, unsecured debts (i.e., credit card debt) and who has assets that can be protected; or who holds a job from which wages are received that would be subject to garnishment.

Any effort to assist a client with a debt matter should start with a comprehensive review of the client’s financial situation and assets. Occasionally, a lawyer may discover that a client’s debt problem developed as a result of an illegal employment termination or an insurance company’s failure to cover a claim. Thus, any debt intake should also include investigation into other underlying legal matters that may have caused the debt problem.

Estate planning. John calls our office extremely upset. His partner of 15 years, Eric, died of AIDS two days ago. John and Eric lived together for the last 15 years in a house that Eric purchased. Shortly after Eric bought the home he met John, who moved in with him. Together, John and Eric purchased all of the furnishings for the house, made repairs and paid the mortgage. In fact, John had paid all of the mortgage for months after Eric became too ill to work. John’s name never appeared on the deed, and Eric never executed a last will and testament before his death. Eric’s mother showed up at the house earlier in the day while John was at work and had all the locks changed. She said she would call the police and have John arrested for trespassing if he tries to come back to the house because the house belongs to Eric’s estate, not to John.

HIV-positive people need estate planning for many reasons, even if they don’t have significant assets. Because many people with HIV are still relatively young, many have never given any thought to tying up their affairs. They also need planning documents such as an advance medical directive and financial power of attorney. Failure to draft and execute appropriate documents such as a last will and testament or power of attorney can lead to great difficulties, both for the HIV-positive person and for her loved ones and family members after she becomes incapacitated or dies.

Drafting a will for someone with HIV/AIDS is often not a complicated process, especially for clients who have limited assets. Yet an advance medical directive and a last will and testament are essential documents for people with HIV/AIDS and their loved ones. A lawyer who will listen to a client, learn who constitutes his chosen family and to whom he wants to leave any property that he has, and give advice about how to accomplish those wishes, can meet a critical need for a person with HIV. Unfortunately, many gay or unmarried people like Eric and John may not realize that their property will not pass to a life partner without a will. Many people do not realize that doctors and hospitals will honor the decisions of family by blood or marriage on behalf of a patient who cannot make those decisions for himself, even if that person has been estranged from those relatives for years.

Proper planning for incapacity and estate planning allows people with AIDS to exert some control over their lives by allowing them to make determinations about their health and medical care as well as finances while they are alive. Such planning ensures that property disposition, and in some instances funeral arrangements, will proceed as the client wanted.

Use Your Skills

HIV disease almost certainly infiltrates beyond the bodies of infected individuals to attack numerous other aspects of their existence. While physicians armed with cutting-edge treatments may fight for their health, many HIV-positive people have no one to help them fight for their legal rights and the welfare of those dear to them.

Advocacy on behalf of people living with HIV/AIDS requires sensitivity, careful attention to confidentiality needs, and good listening skills. Equally important, lawyers must understand that while the legal problems of people with HIV may resemble those of other clients, the special circumstances of these clients necessarily shape legal issues and strategies. Fortunately, good lawyers around the country will continue to bring their skills and understanding to the aid of thousands of HIV-positive people around the country.

Support Articles:
   Afforable Pro Bono

Todd Pilcher is a staff attorney and pro bono coordinator at Whitman-Walker Clinic Legal Services in Washington, D.C. He would like to thank Laura Flegel and Daniel Bruner of Whitman-Walker Clinic Legal Services for their thoughtful ideas and comments.

Back to Top