A Memoir * Michael W. Connett

   
Acquired Immune Deficiency Syndrome or HIV infection     

   

AIDS is caused by infection with the human immunodeficiency virus HIV-1.  The HIV virus infects cells in the body that fight infection. The primary cell infected is the CD4 lymphocyte, but it infects other infection-fighting cells as well.  This causes immune system impairment and difficulty fighting infection. Because the immune system has a role in cancer prevention, there is also an increase in certain cancers.  To be HIV positive means that one is infected with the HIV virus.  To be given the diagnosis of AIDS, one must be infected with HIV, which means that the HIV infection has compromised the immune system to the extent that an AIDS-defining illness (one of multiple illnesses) has occurred.  Before current "triple therapy" was developed, nearly all those who were HIV positive went on to develop AIDS.  Now it is not the case.  But, not all persons respond to "triple therapy" and a proportion still goes on to develop AIDS.     

   

HIV syndrome occurs 3 to 6 weeks after infection and includes (these I've personally experienced):

Fever
Sweats
Sore throat
Enlarged lymph glands
Headaches
Weight loss
Joint aches
Muscle aches

Diarrhea
Rash
Oral ulcers
Symptoms of any opportunistic illness (i.e., bacteria, fungi, protozoa, and viruses)
Some may not develop any symptoms for years after exposure.
Candidiasis (white patches in mouth)
Pneumocystis carinii (lung infection characterized by dry cough and shortness of breath)
Atypical mycobacterium
Toxoplasmosis (infection in brain with confusion)
Progressive multifocal leukoencephalopathy (causes dementia)
Herpes simplex (causes ulcers that persist over 1 month)
Lymphoma (enlarged glands)
Kaposi's sarcoma (purple skin lesions)
Diarrheas -- cryptosporidosis and isoporiasis
Recurrent pneumonias
Tuberculosis (cough)
HIV encephalopathy (dementia)
HIV wasting syndrome
Cytomegalovirus infection /blindness
Cryptococcosis (especially meningitis)
Disseminated coccidiomycosis (fungal infection found in Southwest United States, typically affects lungs, but in HIV may go into spinal fluid and cause meningitis)
AIDS wasting (weight loss) syndrome
Depression and social/family isolation
Neuropathies

Pain
   
   

HIV can be found in many types of bodily secretions (i.e., semen, urine, tears, saliva, blood, breast milk, spinal fluid, vaginal secretions).  However, the risk of transmission is highest through semen and sexual activities.
Anal sex -- highest transmission rate
Heterosexual sex, homosexuals, bisexual males who engage in unprotected sex
Intravenous drug abusers who share needles
Oral Sex -- lower, but risk still present
Blood and blood product transfusions between 1977-1985 (now rare, because blood products are carefully screened)
Contaminated needle stick as in healthcare professionals (1:300 risk)
Children born to mothers with HIV infection
Not spread through casual contact such as touching, hugging, or sharing toilet seats
Not transmitted by insect bites such as mosquitoes
No documented cases of HIV infection from saliva or tears; however, if there is an open sore on the skin or mouth, the risk increases.     

   

Examination:
May be normal
Signs & symptoms of AIDS-defining illnesses (see below)
Laboratory Findings:
HIV antibody test -- the HIV virus multiplies in the body for weeks or months before the body responds by making antibodies to it, at which time the HIV test is considered positive.  Decreased CD4 lymphocyte (also known as T-helper cells) count (the lower the count the more likely to develop infections and illness)
Symptoms begin to occur with CD4 count falling below 350/ml
Anemia
Polyclonal hypergammaglobulenimia
High cholesterol
Skin antigen testing fails to react to typical antigens    

   

The goal of treatment is to keep CD4 count above 200/ml, prevent/control opportunistic infections, and improve the quality of life.
Anti-retroviral drugs (Highly Active Anti Retroviral Therapy or HAART) -- these interfere with the HIV virus' ability to replicate.  Some common ones are listed below:
Nucleoside analogs
Zidovudine (AZT)
Zalcitabine (ddC)
Lamivudine
Stavudine
Protease inhibitors
Indinavir
Ritonavir
Nelfinavir
Saquinavir
Triple therapy -- it has been found that combining two nucleoside analogue drugs with one protease inhibitor can substantially reduce the viral burden, infection rate, and death rate in HIV infection.
Post-exposure prophylaxis (e.g., after a needle stick)
AZT probably beneficial
AZT plus other antiretroviral drugs probably will be shown to be more effective.    
   

Before the more effective "triple therapy" was developed, various regimens were recommended to prevent specific infections. For example, Trimethoprim-Sulfamethoxazole for Pneumocystitis carinii included various regimens that are now reserved for those who fail to respond or are intolerant of "triple therapy."
Abstinence
Safe sex (use of condoms and oral barriers)
HIV testing prior to a relationship
Stop intravenous drug abuse, sharing of dirty needles, and other high-risk behaviors.
Healthy lifestyle and join support groups if at risk

My CD4 T-Cells/Viral Load Counts

October 1991 - Present

"What is Viral Load?
Viral load means the amount of HIV in the blood of an HIV+ person.  While CD4+ T-Cell counts often help doctors determine how healthy your immune system is, viral load can help you figure out how fast the immune system is being damaged.  If your viral load is high, your immune system may be getting weaker.  When your immune system gets weaker, other infections and diseases can move into the body.  Also, if a woman with HIV has a high viral load while she is pregnant, her baby has a higher chance of being infected with the virus.

How can you test for your viral load?
By taking a blood test, doctors can measure the amount of virus in your blood.  The result of this test can be used with your CD4+ cell count to determine how healthy your immune system is.
There are two major kinds of viral load tests.  One test is called PCR and the other one is called bDNA.  These tests are different and they measure HIV differently.  It is important that you and your doctor choose one kind and use this same kind each time you take this test.

Does it help to know what your viral load is?
You can use the viral load test to help keep track of how well you are and also help you decide when to start taking anti-HIV drugs or switch to different new drugs.  Some doctors and scientists say that if you have more than 10,000 "copies" of the virus in your blood sample, anti-HIV drugs should be started.  This can help stop HIV from destroying your immune system and even reverse some of the damage already caused by the virus.
The viral load test can also show how well the anti-HIV medicines are working for you.  Before you start taking the medication, you should take the viral load test two times to be sure of the results.  After taking the medicines for several weeks or a month, you should take the test again to find out if the anti-HIV drugs are helping to reduce the amount of HIV in your blood.

Undetectable: what does this mean?
Maybe you have been taking anti-HIV drugs and your doctor has told you that your viral load is "undetectable".  This means that the viral load tests could not see any virus in your blood.  This is good news, as it means the drugs are working well against the virus.  However, the virus is probably still there.  These tests cannot see small amounts of the virus in the blood.  HIV can also hide in other parts of the body and cannot be seen using these tests.

What's the bottom line?
Taking the viral load test is a very important step for people who have HIV.  Remember, you need this information to have discussions about your health.  Take time out to think about it and to make your life better!"

"AIDS is a war against humanity ... this is a war that requires the mobilization of entire populations."

Nelson Mandela

"I used to be afraid of dying, but I'm not anymore.
I'm more afraid of what happens to the people who live..."
from "And The Band Played On"

----- Original Message -----

To: hiv-aids-support@yahoogroups.com

Sent: Sunday, February 09, 2003 10:37 PM

Subject: Re: [hiv-aids-support] What Do We Do!?!

 

Amen! As a gay man who has AIDS, I thank you. Yes, when this disease came to light it seemed to only strike in a segment of the community that many wish would go away. Sadly, it did not stay in that group for long. It spread to other groups. At first the new cases were also in "undesirable" segments of the population. It did not stop there. Now there is no part of humanity that is truly "safe" from this disease.

Unfortunately many victims from the first group seem to feel that they NEED AIDS in order to be recognized. They feel that since the disease has branched out into the whole population, they have lost some of their visibility. I am not immune to this. The first time I met a straight woman with the disease at a local ASO I asked her what in the hell she was doing at OUR organization. Now the ratio of straight to gay has grown even more and the system is being overloaded. When are the blind fools in the gay community going to wake up and realize that this is not THEIR disease? Perhaps if they do and put the energy they put into this in the 1980's, they can get the recognition they want, but for the right reason.

 

Okay, now before you all start throwing darts at me remember, I am a gay male and a part of the group that seems to be whining more about this disease than the others. To the whiners: Shut up and do something about it!

 

Bill steps off the soap box.

Take care

 

----- Original Message -----

To: hiv-aids-support@yahoogroups.com

Sent: Saturday, February 08, 2003 10:31 PM

Subject: Re: [hiv-aids-support] What Do We Do!?!

A very interesting and enlightening experience.  I am very glad you posted.  I have stated before I have many concerns regarding the public perception of gays and HIV. (Jeanne slips into her flameproof body condom (courtesy of Michael))
I will take this opportunity to remind folks, especially new ones, that I am a straight, (mutt) lol, white woman who does not have HIV.  So why am I here?  
I have been involved with PLWA since the early '80s.  Beginning with watching my gay friends getting very very sick and some who just "dropped dead" no long hospital stay, just gone.  Volunteered and did what I could. FF to 1990.  The area I live in is beautiful, gorgreous scenery, sparsely populated  frontier country and there are some of the nicest people you could ever meet.  But there are also a few very loud, and of very low intelligence who have the basic "homo" mentality.  And they insist on babbling loudly and often usually exacerbated by consumption of a 12 pack of brewskies.
 By 1995 it was clear the area desperately needed an organization to provide education 101 and support to PLWA and their loved ones. So I "officially" founded the organization, applied for and received IRS 501 (c) 3 status.  Since we survive by donations - no government monies or grants many times the volunteers have pitched in to help get people a decent place to stay or paid power bills etc.  It may be written PLWA comes under the ADA laws but nothing happens fast.  What else could we do?  Of course I have written grants but our primary target group is white frontier kids and young adults.  I'll spare you my efforts but we are still here, still need money but I am proud of  our reputation.  
It was clear the whole community had to be desensitized to the mere words "HIV" "AIDS" and the supposition that HIV was only a problem for "bad" people (read gay men).  We tried so hard for so long to get the general community to accept HIV........nor "label" it....we may have gone too far.  
   I don't know quite how to say this so as not to offend, as it must be said.  There were in the '80s huge numbers of gay men who began to realize HIV, whether they had the name or not, that  they (gay men) seemed to be the only people getting sick.  No one seemed to care very much and most of the people were living in large populated areas. It became obvious that this was a "new" disease and the CDC began to investigate why otherwise healthy young men would die so quickly.  In the true spirit of such an organization a statement was issued proclaiming they (the CDC) would have the problem under control in two years.  Just a virus after all.  To be fair I don't think anyone knew the scope of the virus or had any inclinations to believe it would spread to every population on earth.
  In the mean time AIDS victims were dying on a dramatic scale.  Towns and cities tried to devise ways of stopping  the illness.  At the same time there was a growing number of gay men who felt they were ignored, because they were gay.  Many fought long and hard to be noticed.  Laws were passed quickly to shut down the bath houses and similar areas as a way to stop the spread of new cases. It had virtually no effect.  As a result the gay community felt abandoned and clung to each other because there was no one else.  They became the "elite" of the HIV world.  As the virus spread to the straight/general population, there was some hostility from the gay community as they felt others were trying to garner more attention.  I understand wanting to remain in the spotlight because that was how you achieved results, however the "elitist" aura impacted the straight population and created some hard feelings.
   Gay men had worked so hard and long for exceptance they did not want to "share" HIV with any other group.  And organizations like mine kept reminding the public that it wasn't just a "gay" disease.  We did so because others were at risk and to get into people's narrow little mind that they should stop hating the "homos" because they are just like everyone else.  In the process I believe we (I) may have promoted HIV as not that big a deal.  Unintentional of course.  We wanted the hate to end, the fear to stop. It did not occur to us that there would be any resistance with gay men.  After all we are in this together!  A backlash hit the "rest" of the HIV community.....some gay men proclaimed it was not fair and they were being overlooked.  I have no doubt many gay men felt this way because that was their experience.  But it reached a point that I had quite a few angry gay men who felt like I was using their efforts for my advantage. My explanation of wanting to help was often greeted with scorn. Some felt it was hard to accept that I simply care and want to help!  I wanted to bring everyone together in this battle, to work together in passion and compassion. And don't tell me it can't be done.  Bullshit! As I have written before - we are going to have to save ourselves.  We, the people cannot wait for Big Brother to save us!  Thus the question "What do we do?"
Everyone has to drop their personal agendas and focus solely on the major issues of housing and medications.  The basics. The meds. Staying alive and as healthily as possible. We cannot afford the luxury of  being separatists!  You can't legislate morality.  You have to cultivate it!  
   I was not exaggerating about the two years of data I have and as I sift through and find definitive "markers"   there is a sizable number of gay men who want to become HIV.  They believe that you take pills and visit the doctor , so what's the big deal? We have to know how many and is this just one population?  Does the same thing happen with other minorities A lot of guys write me to find out where to GET HIV.  Makes me want to beat some sense into them.  They don't respond to logic or knowledge.......only to the siren's song which leads straight to death.
   We must cast aside petty differences.....even such things as religion and culture.  I know many people will say that is a HUGE obstacle but it really isn't.  No one will be forced to do or act in anyway, I am talking about reasoned adults making choices.  Self discipline, compromise and above all love.  We can make the necessary changes. And we are going to have to work on it - this won't be resolved easily or quickly.
Jeanne

bulldawg wrote:

After reading the article from POZ magazine I'm fully convinced that
the gay community has it's head shoved so far up it's ass at times. I
think this was an irresponsible piece of journalism and let me explain
why I do. It isn't that I don't think issues like this (and the one in
Rolling Stone magazine) don't need to be discussed, but I would prefer
that people did so in a more private forum.

Let me tell you about a couple of incidents that have happened here
recently.

I have a friend, let's call him Bob, and he gets about $330/month for
SSI. Then he receives his Section 8 housing benefit from the city for
another $300/month. He utilizes the Texas ADAP for his medications but
they only allot a person 3 or 4 drugs per month (depending on funding
for the year) and the last thing he receives is $38/month in food
stamps. Each year there is a slight cost of living increase with SSI,
so he gets about $10 extra for his monthly pay from the State. However,
the city offsets this by lowering the amount of money he will receive
in his food stamps, so this year he has been dropped to $28/month. His
rent is $400/month so $100 of his SSI has to go to pay rent. That just
leaves $230/month to pay for any extra medications which might exceed
his limit from ADAP (antibiotics for instance), utilities, clothing,
and food not paid for by the food stamp program.

If he tries to go back to work, even part-time he loses everything.
Some people are thinking that might not be so bad as he could probably
make more by holding down a real job, and he probably could...but since
he has a pre-existing condition, if health insurance is even offered,
you must be healthy for two years before coverage even kicks in. Then
he would have to pay for his medical expenses and prescriptions out of
pocket. The cost of these things would far exceed what he would be able
to make, so he stays on disability. And like most people is forced to
work part-time under the table just so he has enough money to survive
on, all the time hoping not to get caught.

Now recently we were out having coffee, my treat since he doesn't even
have money for that (we do have what most of the gays here refer to as
the "poor-man's" coffee shop LOL...$0.75 for the first cup $0.25 for
refills and it is any flavor of coffee you want as long as you want
regular coffee LOL). We were sitting at a table with some of our
longtime ACTUP buddies and noticed that a guy at the next table had
been listening in. So my friend Bob approaches him and boldly asks him
if he is finding our conversation interesting. In all actuality the man
actuality the man wants to join in the conversation. He wants to
confront us as a group since we are all gay and have HIV.

The guy moves over to our table and says he completely understands why
it would be so appealing for guys to want to become HIV as revealed in
the Rolling Stone magazine article. It's because they can collect
insurance money and have everything in their lives paid for while they
sit on their asses at home. He was under the impression that everyone
collects large salaries and there was no differentiation made between
private insurance that some people have and what the government
provides for. To him it was all one and the same. The man makes about
$45K a year and doesn't think his tax dollars should be paying to
support things like the ADAP program when the only people using it are
sitting at home, going to the gym, and collecting paychecks almost
double what he makes.

When asked where he got his information from he answered that he got it
from the magazines typically left sitting on the rack in the coffee
shop.  My thinking on this. If this man thinks this, and this is one
individual. What are the right-wingers in the government thinking. It
is all they need to add fuel to the fire to decrease funding or do away
with it altogether. It makes all that time in ACTUP seem like a wasted
effort.

This guy's thinking was wrong on so many levels, but one of my friends
at the table was bound to set him straight. To no avail though, the
guy's belief is that unless it is in print then it must not be true.
Why would a magazine which is supposed to be practicing the policy of
unbiased truthful journalism lie about such things.

It isn't that there aren't people who collect large sums of money, but
for most of us, we only collect from the government. I know that I am
luckier than most people I know as my coverage comes from the military.
But I know people who are in far worse situations and have to subsist
on incomes even less than Bob's. It's a sad day when somebody writes an
article to expose an injustice in the world and it is applied to a
group of people as a whole.

Just my thoughts.
Doug in Houston

Date:  Wed Mar 13, 2002  9:15 am
Subject:  [AEGiS] A Q&A from Ask the Doc
To:  "aids" <webmaster@a...>
Question: What exactly is HIV positive? Also, this is kind of a difficult question, but if a person with HIV infection has survived for the past 10 years, how much longer will he continue to do so? One last question, is there any sexual activity for him that can be engaged in without his partner contracting the virus?

Answer: The average time someone survives from the moment of infection until death (due to HIV) continues to increase. At the beginning of the epidemic, the average time was about 10 years. Many people confuse the date of diagnosis with the date of actual infection. The former is usually well known, the latter typically not known at all. There can be many years separating the two dates. It currently is estimated that at least 25% of persons infected with HIV today will survive for more than 20 years, utilizing drugs and treatments available today. The effect of combination antiretroviral therapy has been estimated to have added at least 3 years to the average survival of 7 years ago. Average survival today (of persons infected 5-10 years ago) is about 15 years from moment of infection until death. But averages are exactly that: averages. More precise estimates for individuals depend on current and past HIV RNA levels, current and past CD4+ cell counts, number of antiretroviral regimens used, adherence to therapy, response to therapy, current health status, and CD4+ cell count trends over time. At least 5% of HIV infected persons are estimated to be long term non-progressors. That is, in the absence of therapy, these individuals maintain a CD4+ cell count 450 cells and typically have HIV RNA levels < 5000 copies/ml. It is not clear what immunologic features distinguish these individuals from the other 95% of HIV infected persons.

HIV - positive simply means infection with HIV. It is not synonymous with AIDS (which is and always has been an arbitrary constellation of indicator conditions). The virus is active making copies of itself (and typically destroying the CD4+ cells) from the moment it enters the body.

Sexual intercourse when the male uses a latex condom is considered very low risk. The risk is not zero, because the condom could break. Similarly, the risk of transmission from male to female is very low when the woman uses a female condom. Oral insertive and oral receptive sexual activity is low risk. Mutual masturbation (without condoms) approaches zero risk of transmission of the virus. Deep kissing is risk free (unless each person has active bleeding).

Rodger MacArthur, M.D.

----- Original Message -----

Thanks so much Michael,

Another question I have and maybe you can help here:-
If a person is HIV+ and the partner not, in unprotected sex is the
risk of infection greater if the + partner has a high viral load?

Is the infection probability directly linked to the viral load (index)?
ie., the lower the viral load - the less chance for infection etc.,

I have been asked this so many times and just cannot answer!!!

Thanks so much in anticipation

----- Original Message -----

 I have another question for you
(or the entire group) - HOW MANY STRAINS OF HIV HAVE BEEN IDENTIFIED
TO DATE?  I understand that one of the biggest risks to an infected
HIV person, is to be possibly be re-infected via another "strain" -
have there been cases of cross-infection documented, and if so, does
one therapy normally work for most differing strains?  Are some
strains more virulent than others? - A mixed bag of questions, I
know, but I have heard various warnings of re-infection (G-d forbid)
from another strain of the virus...

Article: Answering the AIDS Denialists: CD4 (T-Cell) Counts, and Viral Load

Date: 04/21/2000

Author: Bruce Mirken

The self-styled "AIDS dissidents," groups and individuals advocating the view that HIV does not cause AIDS, and often urging people with HIV to reject medical care, have raised their profile in recent months, ratcheting up their advocacy in the U.S. and attempting to influence the health policies of foreign governments. Although these forces sometimes accept the need to treat opportunistic infections, most reject the vast majority of conventional HIV/AIDS treatment, especially use of drugs to combat HIV. This article is part of a series in which AIDS Treatment News examines key arguments put forth by the "dissidents"--perhaps more accurately termed "AIDS denialists," because most deny that AIDS is a genuine epidemic and many deny that the term "AIDS" even describes a real medical condition.

http://4.17.177.49/immunet/atn.nsf/page/a-341-02

HIV, AIDS, and the Distortion of Science

Project Inform - May 2000
Martin Delaney

In the past year, there has been a noisy resurgence of claims that HIV does not cause AIDS and that AIDS is not contagious. Proponents of this view insist that AIDS is caused by personal behavior, notably drug abuse, or by the drugs used to treat AIDS. This view was first stated back in 1987 by Peter Duesberg, a professor of molecular biology at the University of California, Berkeley, who today is viewed as the leader of the "HIV denialist" movement.* Duesberg's claims have been debated and refuted repeatedly in scientific journals and even by a special panel assembled by the National Academy of Sciences.

http://www.aegis.org/topics/mdelaney.html

THE AIDS HERESIES

A Case Study in Skepticism Taken Too Far

By Steven B. Harris, M.D.

http://www.skeptic.com/03.2.harris-aids.html

The Controversy over HIV and AIDS

The contention of a small number of so-called "dissenters" that HIV is not the cause of AIDS has recently received international attention, thanks to South African President Thabo Mbeki's public questioning of the scientific evidence linking the virus to the disease. In 1994, Science correspondent Jon Cohen conducted a thorough examination of the arguments of the leading dissident, virologist Peter Duesberg. Science is making those articles available free of change in view of the serious public health implications of this debate.

http://www.sciencemag.org/feature/data/cohen/cohen.shl

The National Association of People With AIDS advocates on behalf of all people living with HIV and AIDS in order to end the pandemic and the human suffering caused by HIV/AIDS.  This website is devoted to our ongoing mission to educate, inform, and empower all people living with HIV and AIDS.

Democrats may have mustered little opposition to Bush's war on condoms, but if the Republicans gain control of the Senate, it will certainly get worse.  It's up to you to say no to Bush's paleolithic obscurantism on election day in November.

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AIDS Knowledge Base, http://hivinsite.ucsf.edu/InSite.jsp?page=KB

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Conferences: calendar of upcoming events, reports,
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     Access to Care and Insurance

Access Project (information on payment assistance) at AIDS Treatment Data Network,                 http://www.aidsinfonyc.org/network/access/index.html

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     National Pediatric AIDS Netwok, http://www.npan.org/

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Subject: [Fwd: Life or Death...]
   Date: Sun, 22 Oct 2000
   From: Kevin O'Toole 
Dear Friends,
Hope all of you are well these days.  I'm good.  Just wanted to share
some things with you that have come my way recently.
____________________

>From a Gay friend in Colorado...

Dear Friends,
    I invite you to check out a fantastic new web site:
<http://www.outvote2000.org>
    I am working with (and for) Out Vote 2000, a nonpartisan project of the Gill Operating Foundation, to encourage Lesbian, Gay, Bisexual, and Transgender persons to vote on November 7th.  I would invite you to go to the site, which is packed with resources to help LGBT & Affirming folks make an informed decision on November 7th.  Please copy this e-mail to others who you think would benefit from it.
____________________

>From my friend Michael in Kentucky living with HIV disease...

As I was watching the Debate and opening the days mail, I came
face-to-face with George W. on the cover of the November issue of the AIDS/HIV Magazine-"POZ".  The timely released cover reminds us whose hands the blood of all those who have perished in this epidemic is drenched with:

The magazines founder, Sean Strub, writes in the opening piece:

"People with AIDS/HIV face a quandary when voting for the next president November 7.  Our very survival over the next four years is inextricably linked to the national politics of funding research, protecting civil liberties and delivering health care.  We are literally held hostage by a system that has more often been a hindrance than a help.  I deeply resent the shallowness of the debate around the issues, particularly AIDS...

Four years ago in this space I wrote: 'I will cast my ballot to re-elect
President Clinton.  But I will do so in disgust, mourning the Bill
Clinton I used to know.  The Clinton I campaigned for and believed in was a man whose commitment to fight AIDS was unquestioned.  He was driven to save lives and reverse 12 years of Reagan-Bush neglect.'...

But once again I will vote for the Democratic candidate, because the alternatives are either unrealistic, symbolic campaigns (the Green Party's Ralph Nader) or unacceptable (the Republican party's George W. Bush and the Reform party's Patrick Buchanon).  The greatest threat to PWAs/HIV is a Bush presidency-an opinion supported by all 25 of the national AIDS leaders interviewed by Doug Ireland for "Grin and Cast It" (page 36), the HIVer voter's guide in this issue.

The least of it is that George W. has never uttered the word AIDS
publicly.  Beneath his "compassionate conservatism" rhetoric is a
five-year AIDS record as governor of Texas that's worse than abysmal; it is murderous.  As Ireland reports, under Bush's watch, Texas' AIDS cases rose to become the fourth largest in the nation while spending for prevention and treatment remained measly.  Bush appointed a Christian Right state health commissioner who instituted names reporting, backed abstinence-only HIV prevention and slammed condom use as un-Godly...

As president, Bush certainly would be a leader on AIDS: a leader in
silence and indifference, a leader whose actions would only hasten our deaths.  This isn't rhetoric.  Right now our drugs are failing, our AIDS service organizations are folding, our activists are burning or selling out and many of our allies have moved on to other causes.  The only movement on AIDS is the backlash against "special treatment" for HIVers.  In a Bush administration, initiatives to forcibly test, track down and list - not to mention criminalize - people with HIV will become more likely, more aggressive and more difficult to fight.  He will protect the profit margins of drug companies and HMOs, derailing any chance of national health care, meaningful price controls, patient rights protections, developing countries' access to treatment and other reforms.

Even if you do it only because Gore, like his boss, "feels your pain,"
and you're terrified that Bush will restore a Reagan-era AIDS neglect, get to the polls and cast your vote..."

AIDS: Bush policy ignores science  Derrick Z. Jackson-The Boston Globe from The Cincinnati Enquirer-Monday February 25, 2002.

"Colin Powell is a Trojan horse on AIDS.  Last week the secretary of state said on the MTV music channel that he thought condoms were a necessary part of the war against the disease.  Conservatives who assume that any message other than abstinence is Sodom and Gomorrah were besides themselves.  The president of the Family Research Council, Ken Connor, called Mr. Powell "reckless and irresponsible".

Mr. Powell shot back, "We have to use all the tools and programs at our disposal - abstinence, faithfulness, and yes, condoms.  And I don't take one step back from the remarks I made.  Any other statement is reckless and irresponsible."

For all of Mr. Powell's smooth moves, the onset of rigor mortis in the White House is symbolized by President Bush's appointment of Dr. Tom Coburn to cochair the advisory council on HIV and AIDS.

Dr. Coburn, a former Republican congressman from Oklahoma, will share the chairmanship with Louis Sullivan, the secretary of Health and Human Services under Mr. Bush's father.  Mr. Sullivan was a bureaucrat who supported local projects for needle exchange among drug addicts in 1989 but opposed them in 1990 under White House pressure.  In 1992, Mr. Sullivan led the senior Bush administration's response to AIDS with a $1.5 million ad campaign that neither mentioned condoms nor urged sexually active people to practice safe sex.

While Mr. Sullivan was a poodle, Dr. Coburn is a pit bull.  He comes in with some political cover as a supporter of the Ryan White Act, which funds the care of low-income AIDS patients.  But in Mr. Bush's current budget proposal, the Ryan White Act is level-funded while "abstinence-only' programs would receive an increase of 33 percent.  This is in the absence of any evidence, according to departed Surgeon General David Satcher, that such programs work.  There is solid evidence that programs that combine abstinence with education about condoms do not increase sexual activity.

While Dr. Coburn has a demonstrated sympathy for people with AIDS after they get the disease, he is dangerously limited concerning prevention efforts such as needle exchange.  Many studies have indicated that clean-needle programs do not contribute to higher drug use or crime and participants are more likely to enter treatment programs.  Dr. Satcher said, "The science showed very clearly that needle exchange programs could in fact reduce the spread of HIV." 

Dr. Coburn would replace Dr. Satcher's science with Pollyanna pontification.  He has called needle exchange "failed compassion."  He said: "If you want to help somebody  help them get off drugs, don't give them clean needles."

Dr. Coburn cannot possibly deliver on this, since Mr. Bush's proposed funding for drug treatment, despite a touted 6 percent increase, would reach only 550,000 of the between 4 million and 5 million people who say they need help.  Law enforcement and incarceration still receive five times more funding.

Dr. Coburn is condomphobic.  research compiled by the Centers for Disease Control indicates that condoms highly effective against the transmission of HIV when used correctly.  Dr. Coburn has for years tried to discredit them by saying "they break, they slip."  He says they represent a "prevention strategy that's failed."  Never mind that the nonbreak rate, as reported in a French study of 20,000 people, was 96.6 percent.  The nonslip rate was 98.9 percent.

Dr. Coburn is also homophobic.  While AIDS hits everyone, its impact on gay men in the United States still makes it a disease many communities stuff in the closet.  Dr. Coburn has been one of Washington's most virulent proponents of keeping the closet locked.  In 1996, when the House effectively banned gay marriage, Dr. Coburn said, "We hear about diversity, but we do not hear about perversity."  Dr. Coburn has proudly stated that he represents a district where homosexuality is perceived as "immoral," based on "perversion" and "lust."

This does not sound like a man ready to use every available means to fight a disease that infects between 800,000 to 900,000 people, according to the CDC.  Nor does it sound like he will be working for who will put proven strategies before phobias.

It was great to see Colin Powell supporting condoms.  The problem is, the Trojan has been wheeled into the White House, with social conservatives setting fire not just to condoms but science."

"In November 2000, HIVer Jeff Crafford got word that his federal disability benefits were going up by $45.00.  Good news, right?  Of course not.  The increase bumped his income just above the cutoff level for Medicaid.  Suddenly, Crafford, 35, found himself without health insurance.  Not to panic - this was the very type of bind that the AIDS Drug Assistance Program, or ADAP, is intended to fix.  ADAP is a unique government program that covers the cost of AIDS Drugs for HIVers who make too much money to be eligible for Medicaid and too little to afford private insurance.  But when Crafford, who lives near Little Rock, went to apply for ADAP, he discovered that he was out of luck. Arkansas' ADAP program was closed to new enrollment.  His name would go at the end of a long waiting list.

Here Crafford's tale turns Dickensian.  In order to scrape together enough money to pay for the HIV regimen that was keeping him healthy, Crafford resorted to extreme measures - fishing recyclable cans and bottles out of garbage bins to redeem at grocery stores for nickels, eating nothing but $1 microwaveable meals.  But even that wasn't enough - for five months, he had to take an unwanted drug holiday.  Within three months, he came down with a severe case of cryptococcal meningitis and ended up in the hospital.  "I felt like I just wanted  to go ahead and die," he recalls.  "I was beyond desperate."

Crafford is now receiving assistance from a charitable fund set up by the drug industry.  But this lifesaver covers far fewer meds than ADAP - and skimps on antibiotics.  "If I get another opportunistic infection, I don't know what I'm going to do," he says.  "I'll just have to do without something - like food."  He is not joking

Literally scores of PWAs are finding Craffords tale more than a cautionary one now that the chronically cash-strapped ADAP faces its worst-ever budget crises.  This year not only Arkansas but eight other states have closed  their ADAPs to new enrollees.  As a result, activists estimate that some 1,500 HIVers are languishing on waiting lists.  Thousands more may join them now that Congress has failed to boost funding as needed.

But even those already enrolled in ADAP - a total of 125,000 HIVers, or one in every three in treatment - have reason to lose sleep.  There is a growing fear among activists that some states will subject their ADAPs to Draconian cuts.  Government officials may decide that certain drugs - human growth hormone, for example, the priciest AIDS med - are not "essential" and drop them from the program.  The worst-case scenario has other states following Michigan's lead by offering a reduced selection of antiretrovirals as a way of holding down costs - leaving drug-resistant HIVers out in the cold.  "This is a very dire situation," says Arnie Doyle, a top official at the National Alliance of States and Territorial AIDS Directors.  "You have treatments available that can prolong life, and a number of people may soon find themselves unable to get them."

There has always been a crisis aspect to ADAP.  It was launched in 1987 when AZT hit the market and activists demanded that Congress do something exceptional to ensure that HIVers without health insurance could afford the long-awaited first treatment.  And Congress did.  But while two-thirds of the money came from the feds, a third was ponied up by the states.  In turn, each state got wide latitude to implement its own program - a logistical nightmare for advocates and lobbyists working to change ADAP policies.

Until 1996 funding for ADAP was relatively modest, but when the protease revolution came along, introducing $15,000-a-year-drug combos as standard of care, enrollment and costs surged.  The program's beneficiaries typically had an annual income that was less than the annual price of the cocktail.  Some were among the working poor who did not get health benefits at work, yet made too much money to be eligible for Medicaid.  Others, such as Jeff Crafford, were jobless but received federal disability payments that also restricted them from Medicaid.  (This is probably due to the policy that upon being approved for SSDI, there is then a two year waiting period before you can be enrolled in Medicare.  Medicare, however, has no prescription drug coverage at all which means that recipients are even more dependent on ADAPs.)

At first, state and federal legislators responded to the increased demand for ADAP services by funding the program generously.  Between 1996 and 1999, ADAPs total budget went from $188 million to $665 million, a 350% increase.  But by 2000, amid cries of AIDS exceptionalism" - special treatment for this one disease (which was only proper reparations to the PWA community given Reagan and The Republicans responsibility for the crisis to begin with!) - and a general dimming of AIDS as a cause, Congress' enthusiasm had waned.  (Damn, Republicans again!)  "The thinking was "We gave them money last year and the year before.  (And if they had given the millions requested at the outset, we wouldn't be in this predicament 20+ years into the epidemic!)  Now there are other needs out there," says one state ADAP official.  So that year the ADAP Working Group (AWG), a unique coalition of activists and drug company reps, called for a $130 million hike in ADAP funding.  Congress (Under Republican control!) approved only $61 million.  Last year, AWG predicted would require a $120 million increase.  Then came 9/11, the official recession and a radical shift in priorities inside the Beltway.  Says William Arnold, AWG chairperson, of recent lobbying efforts: "You start talking about the AIDS problem in the U.S. and it becomes 'What about our boys in Afghanistan getting shot up?"  In December, Congress passed a $50 million increase in ADAP funding - once again, less than half what AWG deemed necessary.

The current shortfall will only intensify the crisis triggered by last year's funding gap, according to advocates.  "It's a snow-ball effect," says Ryan Clary, a community organizer at Project Inform, an AWG member.  The writing's on the wall - longer waiting lists, shorter drug formularies.  "Even with $60 million in new funding, the existing waiting lists would grow," says James Driscoll, the federal affairs advisor for the National AIDS Treatment Advocacy Project, another AWG member.  Driscoll warns that seven more states may cap enrollment.

The Florida program - the nation's third largest with 15,000 enrolled - may be in the greatest jeopardy.  Tom Liberti, chief of the Bureau for HIV/AIDS at the Florida Department of Health, reports that his state's ADAP will likely be hit with an unmet need of $6 million in 2002.  Closing the program to new enrollment, which would create a waiting list of several hundred within six months, is a distinct possibility.  "We're very, very concerned," he says.  "We've not had to close the program yet, but I can tell you what's going to happen by the end of march."

Worse troubles loom for ADAP in the near future.  Several major advances in AIDS treatment, such as the anti-HIV fusion inhibitor t-20 and the hepatitis C med Pegasus, may soon hit the market.  Given the current budget trauma, advocates are at a loss as to how they will persuade all 50 states to add these lifesaving drugs with their hefty price tags to the ADAP formulary.

Yet such new therapies will be in high demand with ADAP enrollees - hep C, for example, is a serious co-infection that dis-proportionately strikes African-American HIVers (another group of 'the right people' in many other Americans eyes!), many of whom depend on ADAP.  Driscoll says that California alone would need an additional $145 million from the feds to add Pegasus and the few other hep C drugs to ADAPs roster.  "So right now, that's not even on the table," he says.  "And minorities are going to suffer the most."

Welcome to hard times.  As the ADAP Working Group ontemplates bankrupt ADAPs, the un-easy but effective symbiosis between AIDS activists and the drug companies is increasingly strained.  Some advocates are calling for a tactical turnaround - time to target Big Pharma more aggressively.  Antiretrovirals alone consume more than 80% of ADAPs budget.  These activists believe that begging the government for more money no longer suffices (not to mention that the pleas are falling on deaf Washington ears!); the drug industry must bite the bullet and curb prices - at least until ADAPs budget debacle passes.  "If prices continue to escalate," says Anne Donnelly, Project Inform's public policy director, "it's a recipe for ADAPs failure."

But pressuring pharma to lower drug prices has never been a leading AWG strategy - in this strange-bedfellows union, it's tough to hold your partner's feet to the fire while keeping them in bed with you.  Still, the community groups represented by the activists who sit cheek to jowl with drug company officials at AWG meetings are among the most vocal opponents of drug-profiteering.  While critics grumble that AWG skirts the pricing issue, AWG advocates counter that the rising cost of AIDS drugs accounts for only a third of the increase in ADAP expenditures.  The main cause of the coming ADAP bust is due to exploding enrollment and - the good news - the longer life expectancy of HIVers.  "Even if you cut the price of every single drug covered by ADAP 33%, the program would still be in trouble," William Arnold says.

Under current federal law, pharmaceutical companies can increase prices they charge ADAPs by no more than the cost of inflation.  Arnold worries that asking Pharma to reduce its profit margins even further could make it averse to the financial risks entailed in developing new drugs - which is the industry's own argument.  "As an AIDS advocate, I don't have the luxury of beating up on the drug companies," Arnold says, adding, "I feel that the drug pricing ADAP gets from the industry is quite attractive."

But some experts and activists - and even several of the state officials who run ADAPs - see a shiftto a price-lowering offensive as the only way to keep ADAP from bottoming out.  Peter Arno, professor at Albert Einstein College of Medicine in Bronx, New York, and author of Against the Odds: The Story of AIDS Drug Development, Politics and Profit, says "The strategy of the AWG is bad public policy.  The public interest would be better served by working to bring down prices than by going to Congress every year, hat in hand, to ask for more money to subsidize the profits of the drug companies."

PWA Linda Grinberg, a member of the Fair Pricing Coalition, a group of activists and ADAP officials, says that Pharma may be willing to lower its prices in limited cases, but it's unlikely to take any drastic measures - such as enacting an across-the-board freeze on prices.  Grinberg doesn't see the Fair Pricing Coalition taking a more aggressive stance.  "You can ask for the moon and the stars, but is it reasonable?" she asks."I'm not sure how much leverage we really have."

There is no happy ending to this chapter - possibly the last - of the ADAP story.  With AWG unwilling or unable to win price cuts, federal funds and enrollment both largely capped, and demand rising, more and more HIVers will face a Sophie's Choice: between meds and food -or, at least quality of life. (Which again, many of our fellow Americans don't consider us worthy of to begin with!)  Although interim measures have been proposed by outsiders - that ADAPs form joint purchasing agreements to leverage better drug prices, say, or that they use funds to buy health insurance policies instead of meds - such stopgap measures have found little favor.  For now, activists have decided to keep on keeping on - a little pressure on industry here, a little lobbying of Congress there.  The only other option, it seems, would be for the feds to ensure that the working poor and disabled HIVers on ADAP were able to afford health coverage.  As one state ADAP official puts it,"Most of us would gladly see this program go away if we could get universal health insurance."  But even before 9/11 no one was holding their breath for that one.

Copyright(c): "The Michael W. Connett - LIVING Trust"
Page Revised: 12/01/99.  Last Updated: Saturday June 4, 2011 .