After 50 years – how close are we to a cure for HIV/AIDS?

23rd January 2012   ·   0 Comments

Part III of a three-part series
Legal Rights and Responsibilities of Those Afflicted with HIV/AIDS

Geoffrey Bowers was born in Somerville, Massachusetts in 1954. He graduated from prestigious Brown University in the spring of 1976. Working for a time as a factory worker, he soon became a television news reporter — saving most of his earning so that he could enroll in the Benjamin N. Cardozo School of Law in New York City. His goal in life was to become an attorney specializing in international law. Along with his savings, a partial scholarship and a night job, by the fall of 1979 he was able to enroll in law school. Already fluent in Spanish, French, German, Italian and Dutch; he would make the Cardozo Law Review within a year. After graduation, in 1984, he was hired by the international law firm Baker & McKenzie as a litigation associate. He was 30 years old and “on top of the world.” He excelled at what he did and as such every year received exemplary evaluations and corresponding pay raises and bonuses.

In April of 1986, a small purplish lesion appeared on his face and began to grow larger every day, eventually covering a significant part of his face. After consulting his physician, he was diagnosed with Kaposi’s sarcoma and subsequently AIDS. Geoffrey Bowers was also a gay white male. In May of 1986, he received yet another satisfactory evaluation, however within two months, after one of the firm’s partners recognized Geoffrey’s affliction — AIDS — he was terminated from the law firm. If this sounds like the storyline to the movie Philadelphia, the movie was based in substantial part on the life of Geoffrey Bowers.

In this final segment of this series on HIV/AIDS: How close are we to a cure?, The Louisiana Weekly in its mission to educate and inform will examine the sion to educate and inform will examine the legal rights and responsibilities of HIV/AIDS-infected individuals; current medical treatments; and share the story of an individual who was actually cured of HIV/AIDS.

Ryan Wayne White was a 13-year-old white teenager from Kokomo, Indiana who happened to be born with hemophilia when during the course of a transfusion he became infected with blood contaminated with the HIV virus. Upon being diagnosed, his doctors gave him six months to live. After having survived a life-threatening lung disease, resulting in removal of part of one of his lungs, Ryan outlived the prognosis and the following year told his parents that he wanted to return to school.

Even as his doctors stated that Ryan “posed no risk to other students”, the majority of parents and faculty at the Western Middle School in Russiaville, Indiana petrified of Ryan infecting their kids, the faculty and staff, held rallies and signed petitions protesting Ryan’s return. The principal and school board agreed — and banned Ryan from attending school. Ryan’s parents sued and the school board eventually acquiesced and allowed Ryan White to attend school. Ryan White would go on to become the “National Poster Boy” for the discrimination faced by all Americans suffering with HIV/AIDS.

According to AIDS Law of Louisiana, a Louisiana not-for-profit corporation formed in 1989 to provide free legal services to low-income persons living with HIV and AIDS, “In general, people who test positive for HIV are under no obligation to tell other people. HIV-related discrimination re­mains a very real problem. Many people, possibly including your employer, co-worker, landlord, neighbors, teachers, or even healthcare providers, are irrationally afraid of even casual contact with someone who has HIV. Their fear can cause HIV/AIDS survivors and those close to them to be denied a wide range of opportunities and services. Before HIV/AIDS survivors disclose to anyone, HIV/AIDS survivors must carefully examine the possible consequences. They should determine what types of discrimination they may face and the likelihood that it will occur. Although much of this discrimination is illegal, the law does not always offer quick or effective protection. If you [HIV/AIDS survivors] are unable or unwilling to deal with the discrimination you may face, you need to maintain the confidentiality of your HIV status. The simple rule is: DO NOT TELL ANYONE unless there is a strong reason why that person needs to know, and unless you are sure the information will go no further.”

The following guidelines and information were compiled by AIDS Law of Louisiana to address the specific legal issues confronted by individuals infected by HIV/AIDS to protect their legal rights:

EMPLOYMENT DISCRIMINATION

“Many people who have expected a sympathetic response have instead been harassed or fired. Even employers who are not AIDS-phobic have tried to fire people with HIV in order to control health insurance costs, or because of fears about how customers would react. If you miss work often or need to go on sick leave or disability, you will have to explain why. Check with an attorney to determine what information to provide your employer and when. If there are 15 or more employees at your job, the Americans with Disabilities Act provides some protections for people with HIV in most instances

All private employers with 15 or more employees (except certain private clubs), all private employers who receive government funds, and all state and municipal employers are covered by state and/or federal anti-discrimination statutes. Labor unions and employment agencies are also covered by these statutes.

As long as your condition does not interfere with your ability to perform your “essential job functions,” these laws protect HIV/AIDS survivors against discrimination in any of the terms or conditions of employment. Even if your condition does interfere with your ability to do your job, the law may require your employer to make “reasonable” accommodations within your job environment or duties if these will enable you to do the job. This might mean adjusting your hours or work assignments if these adjustments do not “unduly burden” the employer. You may also have the right to take a certain amount of time off from work for medical care under the Family and Medical Leave Act.

HEALTHCARE DISCRIMINATION

Virtually all healthcare providers (physicians, nurses, hospitals, nursing homes, ambulance services, etc.) are now covered by laws prohibiting discrimination against people with HIV/AIDS. These laws prohibit a healthcare provider from refusing you treatment or services, as well as from treating you differently or charging you more, based solely on your HIV-status.

There are two limitations on this protection. First, a healthcare provider does not have to treat you [HIV/AIDS survivors] if your condition requires specialized skills or knowledge that he or she does not have. In this case, the provider need only refer you to an appropriate specialist.

Secondly, a healthcare provider may not have to treat you if there is a significant risk that he or she will become infected. Many healthcare providers, especially dentists and osteopathic surgeons, continue to refuse to treat people with HIV, citing the risk of transmission. On a related point, some healthcare providers insist on an HIV test before they will treat anyone they suspect might have HIV. However, despite widespread conjecture that transmission may be possible in a limited number of surgical procedures, there is no evidence that any medical procedure, when performed with adherence to universal precautions, poses any risk of HIV-transmission. Moreover, healthcare providers are obliged to follow the same infection control procedures regardless of a patient’s HIV-status.

For these reasons, the courts should find that a healthcare provider has no right to refuse treatment or to insist on an HIV test. The few courts cases that have addressed these issues have so found. However, it will probably be several years before there is a definitive answer to these questions. Until then, HIV/AIDS survivors may still encounter healthcare providers who will refuse to treat them or who insist on testing.

HOUSING DISCRIMINATION

Both the federal and the Louisiana fair-housing laws prohibit discrimination based on disability in the rental and purchase of housing. Federal law does not apply, however, to the rental of rooms or apartments in owner-occupied buildings with four or fewer units. The Louisiana law does not contain this exception. If you are denied housing because you have HIV, you may either file a complaint with the Department of Housing and Urban Development (HUD) or you may file a lawsuit. The HUD field offices for Louisiana are located at: Fisk Federal Building, 1661 Canal Street, New Orleans, LA 70112-2887, (504) 589-7219.

HIV-INFECTED HEALTH CARE WORKERS (HCWs)

Public hysteria surrounding AIDS has nowhere been greater than on the issue of HIV-infected healthcare workers (HCWs). In Louisiana, as in most other states, this has led to reporting requirements and practice restrictions. Pursuant to Louisiana Revised Statute 37:1747, the various state healthcare licensing boards (the Boards of Medical Examiners, Dentistry, Chiropractic Examiners, Nursing, and Practical Nurse Examiners) have each issued regulations governing HIV-infected members of those professions. These regulations are, by law, based on guidelines issued by the federal Centers for Di­sease Control (CDC). Some differences exist between the regulations of the different boards. How­ever, all except the Board of Chiropractic Examin­ers currently require that HIV-infected members who perform or may perform “exposure-prone” procedures to report themselves to their respective boards.

Additionally, the Boards either forbid an HIV-infected HCW from performing or directly participating in an “exposure-prone” procedure or require the HCW to inform patients of his or her HIV-infection before doing so. The CDC’s definition of exposure-prone, which follows, includes almost all of dentistry and surgery

MILITARY PERSONNEL

If you are HIV-infected, you will not be allowed to join any branch of the armed forces. All new recruits are required to submit to an HIV test.

If you are already in the military, you may have to submit to periodic HIV testing. You will not be dismissed merely for being HIV-infected: Congress has enacted laws that prohibit the use of HIV tests results for adverse personnel action. However, homosexual activity and IV drug use are still grounds for disciplinary action and for discharge. (Although the armed services have stopped routinely asking new recruits about sexual orientation, this policy does not apply when there is “cause” to believe someone is homosexual, and being HIV-infected may constitute such cause.) Since you cannot get a disability retirement if you have a disciplinary charge against you, be cautious of making admissions about homosexual behavior or IV drug use.

DISABILITY INCOME

The federal government, through the Social Security Administration, has two programs that provide income to people who are disabled: Social Security Disability Insurance Benefits and Supple­mental Security Income. Both use the same standard of disability: The inability to engage in any substantial, gainful activity due to a medically determinable physical or mental condition that is expected to last for at least twelve months or result in death.

Any of several of the opportunistic infections associated with AIDS, for example, pneumocystis carinii pneumonia (PCP) or toxoplasmosis, will automatically lead to a determination that you are disabled. Any of several other infections, if coupled with a doctor’s statement that you are impaired in certain functions essential to daily living and to working, will also lead to a determination of disability. For people who have symptomatic HIV-disease, but not one of the conditions listed in the Social Security guidelines, a determination of disability is made on a case-by-case basis.”

Additional assistance may be sought through the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which is the largest federally funded program for people living with HIV/AIDS in the United States. The act provides funding to improve access to care for low-income, uninsured and under-insured HIV/AIDS survivors and their families. Ryan White program acts as a “payer of last resort,” used to fund treatment when no other resources are available. At present, Ryan White resources assists over 500,000 people a year and, in Fiscal Year 2010, funding had grown to $2.29 billion.

LEGAL CONSEQUENCES OF INFECTING SOMEONE WITH HIV

In the early 1990s Darnell “Bossman” McGee of East St. Louis, IL., intentionally spread HIV by having unprotected sex with nearly 100 unsuspecting women and girls — some as young as 13 years old — with promises of “Big Mac” meals and a pair of “brand new” tennis shoes. Eigh­teen women and girls were later confirmed infected, and as many as a dozen more unsuspectingly being carriers of his HIV. “Bossman” was murdered before ever having gone to trial.

More recently, former professional wrestler Andre “Gangsta of Love” Davis, of Cincinnati, Ohio was convicted last year of 14 counts of felony assault by having unprotected sex with dozens of women and lying to them about his HIV positive status. Davis now faces up to 120 years in jail.

While no one should ever intentionally expose anyone to HIV,” said Mike Hickerson, founder of “In This Together,” an HIV/AIDS resource center. “EVERYONE should be responsible enough to protect themselves from this disease. If your partner refuses to wear a condom, simply refuse to have sex.” Louisiana Revised Statue 14.43.5 or the Intentional Exposure to AIDS Virus law states that it is a felony for someone to expose someone to HIV without their consent. “No person shall intentionally expose another to any AIDS virus through sexual contact or through any other means or contact without the knowing and lawful consent of the victim. Those who commit this crime shall be fined not more than $5,000, imprisoned with or without hard labor for not more than 10 years, or both. If the victim is a police officer, the fine will be not more than $6,000 and the imprisonment not more than 11 years.” Exposure includes sexual contact, spitting, biting, stabbing with an HIV-contaminated object, throwing blood or other body fluids. Exposure need not result in infection. Prosecutions of individuals exposing others to HIV are on the rise.

According to AIDS law, in its HIV and Criminal Liability, “it is legal to have sex with your partner as long as your partner was informed, has consented, and the consent was knowing and lawful.” One or two beers by your partner could conceivably nullify this agreement. The best course of action accordingly, is to have your partner sign a written affidavit in advance.

Current Trends in Treatments

In spite of significant advances in the treatment of HIV/ AIDS, AIDS is still the sixth leading cause of death amongst Americans between the ages of 25 to 44 years old. Fifteen years ago it was the No. 1 cause of death among Americans in the same age group.

When AIDS was first recognized by the U.S. government in 1981 as a potential threat to public safety, the outlook of individuals infected was bleak; without the antiretroviral drugs currently being used, HIV would rapidly convert to AIDS and an individual could only expect to survive between one and three years. Today however, due to global co-operation, funding and research, according to the Journal of Acquired Immune Deficiency Syndromes, HIV/AIDS survivors today “can expect to live on average 22 years after diagnosis.”

In 1996, with the advent of combination antiretroviral “miracle” drugs, the most significant decrease in number of both new cases and deaths began its downward spiral. In 1992, there was an estimated 896 AIDS diagnoses among children; by 1999, with increased HIV testing of pregnant women, early diagnosis and treatment of HIV-positive mothers, the number of mother to child transmissions had dropped to 195; in 2009 there were only 13 diagnoses of HIV among children of infected mothers.

While attempts at developing an effective vaccine has thus far proven ineffective, CAPRISA 004 microbicide, an antiretroviral vaginal gel offers women moderate protection (40% effective) against HIV infection when administered before and after sex, according to findings published in the July 19, 2010 issue of Science.

Not without a substantial cost…

While no one places a dollar value on a life, the estimated cost of treating an HIV patient over a lifetime at present is $618, 900.00, the overwhelming majority of the expense being the antiretroviral drugs essential for sustaining life. Last year, the federal budget in­cluded a total of $20.4 billion for domestic HIV and AIDS care, research, cash, housing assistance and prevention.

The man actually cured of AIDS…

Timothy Ray Brown, a 45-year-old San Francisco man, tested positive for HIV in 1995. He would later develop a very aggressive form of leukemia. In 2007 faced with his own mortality, he would consent to an experimental, high-risk, stem cell bone marrow transplant which would successfully rid his body of HIV. Known to the medical community as the “Berlin Patient,” Brown would become the first person to ever be cured of AIDS.

His amazing story as well as the science behind his miracle, the medical community using the “Berlin Patient” as a blueprint for a cure as well as an exclusive interview with Kate Krauss, executive director of the AIDS Policy Project, on “The Cusp of a Cure” will be featured in next week’s issue.

This article was originally published in the January 23, 2012 print edition of The Louisiana Weekly newspaper