recently received a letter that raised some interesting issues about eligibility for benefits. It is reproduced below, together with a response based on information obtained from Body Positive's Benefits Counselor, Marty Kraushar.
I am an inmate at Orleans Correctional Facility. I am also a Peer Educator. Although I am not HIV-positive, I have family members who are. They have known about it for years. I only found out in December of 1997, when I was released on parole. Since then I've learned everything I could about HIV. I did not start doing HIV presentations until I returned to prison on a parole violation ten months later.
I signed up for the HIV health education class, which is four days a week from 4:00 to 5:30 p.m. for two weeks each month. The Peer Educator was so impressed with my answers that he eventually allowed me to run certain segments of the class. I also try to educate individuals in the dorm where I stay. Many inmates, I've learned, don't want their HIV status known for various reasons. But the men have learned who I am and sometimes they talk to me. I do what I can for them -- mostly writing letters to AIDS service organizations and answering their specific or general questions about HIV.
I must say that one of the most disturbing trends that I am being privy to (which is why I'm writing this letter) is the fact that many PWAs in prison are playing Russian roulette with their lives. I've known of at least three inmates who have purposely withheld taking their medication until their T-cell (CD4) count reached below 200. They want to be diagnosed with AIDS before they leave prison -- not for Parole Board sympathy, but so that they will be eligible for benefits as soon as they are released. These men are able to do this because here at Orleans Correctional Facility, as long as the men are not on any liquid form of medication, they are allowed to keep their meds with them, and there is no monitoring to make sure the medication is taken regularly or on time. I find this extremely dangerous. I've spoken to them and try to make them understand that what they are doing or are about to do is very dangerous. I have explained to them the consequences of drug resistance and the limited amount of choices they leave themselves. I've told them and explained the chances of them getting opportunistic infections and how they will affect the quality of their lives. But it is a hard argument to win when the one you're preaching to says he knows of other inmates that have done it and are doing fine. I ask what benefits the individual will receive, and he will tell me of various benefits he will receive once released.
I am trying to learn what benefits are available to those who are HIV-positive and those who are AIDS diagnosed. Maybe if I can prove that there is little or no difference in benefits, I can persuade others not to gamble with their lives. If you can please explain to me what are all the benefits they are entitled to, I can then pass on the information. This is one aspect of HIV that really took me by surprise, purposely seeking an AIDS diagnosis to receive financial help, help with housing, etc. Is there really that much of a gap between HIV and AIDS? If this is happening here, I can only believe that it's happening at other prisons in New York State. I've never read about it. Have any other responsible Peer Educators reported such practices to your program?
Also, if you do print this letter, which I hope you do, I hope that your comments are like mine in that they discourage this practice. Maybe if the inmates read it from someone else, meaning someone with an official title, they might start to believe how dangerous their actions are.
Name Withheld Upon Request
Body Positive replies:
Yes, we very strongly discourage this practice. A problem in many prisons is that inmates do not have adequate access to the most advanced and best medications to treat HIV and prevent or delay the onset of AIDS. It is disturbing indeed to hear of people who are not taking them when they are available.
We have learned much about HIV/AIDS over the past two decades, and part of what we have learned is the importance of early intervention to help people live longer and stay healthier. Yes, there has been progress in treatment even later in the disease process, and more people are recovering from opportunistic infections that once would have killed them. But make no mistake: HIV/AIDS is still deadly. It still leads to debilitating illnesses. It still kills.
As far as benefits are concerned, most programs make little or no distinction between AIDS and symptomatic HIV. There are some differences in the various benefits programs between states, and between federal, state, and local programs.
The following are the medical criteria that entitle New York City residents to receive assistance from the Division of AIDS Services and Income Support. Other benefits programs, while not identical, are similar.
-- Candidiasis of bronchi, trachea, or lung
-- Candidiasis, esophageal
-- Carcinoma of the cervix: invasive
-- CD4 count < 200/mm3 or less than 14% of total lymphocytes
-- Coccidioldomycosis, disseminated or extrapulminary
-- Cryptococcosis, extrapulmonary
-- Cryptosporidiosis, chronic intestinal (> 1 month's duration)
-- Cytomegalovirus disease (other than liver, spleen, or nodes)
-- Cytomegalovirus retinitis
-- Encephalopathy, HIV-related
-- Herpes simplex: chronic ulcer(s) of > 1 month's duration
-- Bronchitis, pneumonitis, esophagitis
-- Histoplasmosis, disseminated or extrapulmonary
-- Isosporiasis, chronic intestinal > 1 month's duration
-- Kaposi's sarcoma
-- Lymphoma, Burkitt's type (or equivalent term)
-- Lymphoma, immunoblastic (or equivalent term)
-- Lymphoma, CNS primary
-- Mycobacterium avium complex, disseminated or extrapulmonary
-- Mycobacterium kansasii, disseminated or
-- Mycobacterium tuberculosis, any site (pulmonary or
-- Mycobacterium, other species or unidentified species, disseminated or extrapulmonary
-- Pneumocystis carinii pneumonia disseminated or extrapulmonary
-- Pneumonia, recurrent
-- Progressive multifocal leukoencephalopathy
-- Salmonella septicemia, recurrent
-- Toxoplasmosis CNS
-- Wasting syndrome due to HIV
-- Involuntary weight loss, > 10%, plus
-- Chronic diarrhea (two loose stools daily for thirty days) or
-- Chronic weakness and documented fever for more than thirty days, intermittent or constant.
-- HTLV-associated clinical syndromes
-- Chronic hepatitis
-- Chronic parasitic infections
-- Mycobacterium tuberculosis infection
-- Major bacterial infections
- Chronic sinusitis
- Other deep-seated infections: pelvic inflammatory disease
-- Mucocutaneous/dermatological conditions
- Candidiasis of throat/mouth (thrush)
- Oral hairy leukoplakia
- Nonhealing cutaneous herpes zoster
- Extensive, persistent seborrheic dermatitis
- Extensive molluscum contagiosum
- Chronic aphthous or esophageal ulcers
- Necrotizing gingivitis
-- Hematological abnormalities (without evidence for other causes after evaluation)
- Thrombocytopenia: platelet count < 100,000
- Granulocytopenia: granulocyte count < 1,500
- Anemia: hematocrit < 30%
- HIV neuropathy
- HIV myopathy
- Aseptic meningitis
- Chronic persistent fever of unknown etiology
- Chronic persistent weight loss: > 10% baseline weight
- Cervical dysplasia or neoplasia
- Chronic vaginal candidiasis
- Pelvic inflammatory disease
- Anal neoplasia
- Hodgkin's disease
- Secondary syphilis
- Tertiary syphilis
Body Positive's Benefits Counselor Marty Kraushar is available to provide individual assistance Monday, Tuesday, Thursday, and Friday from 10:00 a.m. to 3:00 p.m. For an appointment, call (212) 566-7333. Walk-ins are seen subject to Marty's availability.
For a description of our Benefits Counseling Program and the programs with which Marty can help, see "You're Entitled!" in the July 1999 issue of Body Positive magazine.
Back to the March 2000 Issue of Body Positive Magazine.