Myth # 1: Everyone can get the drugs.
In New York State, you can get the drugs (and viral load tests) through
Medicaid, the AIDS Drug Assistance Program (ADAP), or most insurance
programs. Few state ADAP programs pay for more than one protease inhibitor
-- many can't afford any. Last year, New Yorkers pressured the legislature
to fully fund ADAP. Should we worry about this year? "We have seen a major
increase in the new combination therapies but within our projection of
cost. If growth continues as projected, our current revenue will provide
for this growth throughout 1997," says Lanny Cross, head of ADAP.
What if you don't qualify for ADAP
"I thought once I got to Medicare, I'd save all this money -- no more
insurance premiums!" said George Bolton, a PWA. "But Medicare doesn't cover
drugs. I bought a supplemental policy, but the annual drug cap is $2,000."
In New York, if you drop your COBRA before qualifying for Medicare (29
months after leaving work), and buy an insurance or health maintenance
organization (HMO) policy, you can keep the policy (and drug benefits)
after becoming Medicare-eligible. However, if you wait until you are on
Medicare, your only options are to buy a supplemental policy (annual drug
limit $1,000-$3,000), a Medicare HMO policy, qualify for ADAP or Medicaid,
or pay cash.
If you've lost your Medicaid card, or are about to leave prison,
you can apply for ADAP to cover you until Medicaid starts. Begin the
paperwork as soon as possible -- prisoners can start before release. Ask
your medical staff for applications, or write to request them from ADAP.
(See Myth Busting Resources on page 23 to contact ADAP.)
Myth # 2: If your doctor is any good, he or she will automatically
put you on protease inhibitors.
"We have a limited number of drugs and there are cross-resistant patterns
between them. I'm thinking a step ahead -- 'What can I use if this drug
stops working?' " says Dr. Michael Mullen, Chief of Infectious Diseases at
Cabrini Medical Center. "I always remember, 'First, do no harm,' but if
someone isn't taking the drugs properly, you really aren't doing harm --
the drug won't be useful for them if they need it later. I just got back
from a meeting on a soon-to-be-released drug which can be taken with food,
three times a day. Much easier for a lot of people."
"I consider disease stage, previous medications, and lifestyle. If
someone is an active substance user," says Dr. Geoffrey Chazen, Chief of
Infectious Disease at The Hospital for Joint Disease, "I'd probably start
them on AZT/3TC and let them prove themselves. In a couple of months, if
they are taking the drugs properly, I'd change drugs. I believe in class
cross-resistance [becoming resistant to one protease inhibitor makes you
resistant to others]. If protease has failed once, even if you're not
resistant to the other protease inhibitors, you'll never get as prolonged a
Myth # 3: If your viral load is undetectable, you can't transmit
HIV, so you don't have to worry about condoms.
An undetectable viral load just means that the amount of HIV activity in
your blood is less than our current tests can measure. Undetectable does
not mean that one is HIV-negative, nor does it mean one couldn't infect
Last month, at the Fourth Conference on Retroviruses and
Opportunistic Infections, Dr. David Ho of the Aaron Diamond Research
Foundation presented a study of eight men who recently sero-converted
(indicating they were newly infected), were taking protease inhibitors, and
had undetectable levels of virus in their blood. All had undetectable
levels of HIV in white blood cells within their semen. (Dr. M. Markowitz
late breaker abstract, LB-8). Within semen, HIV can be found both floating
free within the seminal plasma and also within the white blood cells (yes,
there are white blood cells in semen). Other presentations examined the
amount of HIV floating free in the seminal plasma (outside cells). The
amount of HIV decreased in people who were taking protease inhibitors
(abstract 202) or Crixivan and an experimental drug, DMP266 (abstract 726).
A small study of six-to-seven women on combination therapy (most
were not on protease inhibitors) found that the amount of HIV viral load in
vaginal secretions went down as the viral load in the blood went down.
However, women who stopped drug therapy saw HIV levels increase in both
blood and vaginal secretions (abstract 727).
"No one knows how much or how little HIV you need to be infectious.
We don't know what a safe level of HIV is," says Dave Gilden, Acting
Director of Treatment, Education and Advocacy at Gay Men's Health Crisis.
"In Dr. Ho's study, he didn't look for free-floating HIV in the seminal
plasma, but only HIV in the white blood cells. The technology for measuring
viral load in semen is much cruder than for measuring viral load in blood.
In blood tests, 'undetectable' means less than 25 particles, while in semen
tests, 'undetectable' means less than 1,000 particles. That's a big
difference. Also, Dr. Ho's study was looking at recently infected people.
The longer you have been infected, the more your virus mutates, and the
more varied HIV you have. With lots of different mutations, you are more
likely to have strains that will not respond as well to different drugs. We
are all different. You can't assume that because some people in a trial got
a certain result, you will get the exact same result."
Dr. Chazen adds, "People are going to believe what they want to
reinforce their ability to have fun. Some will assume that undetectable
viral load in the blood is the same as uninfectious. Anecdotally, I have
heard of clients with undetectable viral load and declining T-cells. They
found virus replicating in the lymph tissue of the rectum. As people feel
better, their libido comes back, and they are more interested in sex.
That's great. Just do it safely."
Myth # 4: No one follows those Crixivan food and drug schedules. It's
not humanly possible.
"Crixivan has to be taken every eight hours. You can't eat for two hours
before you take it, or for an hour afterwards," says John Hatchett,
director of the PWA Leadership Training Institute at AIDS Risk Reduction
for IV Users and Ex-Offenders (ARRIVE). "I take my first dose when I get
up, and an hour later eat breakfast. Lunch is 1-2 p.m., so that at 4 p.m. I
can take my afternoon meds (medications)".
"I fear developing resistance, but I could make myself nuts. If
something comes up to interfere with my scheduled meds, I give myself an
hour's grace period. My goal is to get back on schedule as soon as
possible. Say I wake up late, and take the first dose at 9 a.m., an hour
later than usual.
Using the grace period, I'd take my afternoon dose at 4:30 p.m.,
rather than 4:00 p.m., eat dinner from 5-10 p.m. and have my midnight dose
on schedule. It's weird to feel incredibly normal, while keeping my food
schedule in front of my mind."
"If you are having nausea or gastrointestinal problems, ask your
doctor about adjusting dosage, drug interactions, or prescription
antacids," says Russell Saray, a senior executive at Clinique
International. "I also find it helpful to have many small meals through the
Myth # 5: Now you should get out the want ads and start back to
This is a complex and difficult decision. One important source of help is
Multi-Tasking Systems (MTS). Multi-Tasking Systems can provide sensitive
support to help you think this through. Their services include counseling,
vocational testing, career exploration, and some training. They also run a
temporary service with flexible hours and employee benefits. They are
especially helpful for people who have a substance abuse background or
little work history. (See Myth Busting Resources on page 23 to contact MTS.)
The Office of Vocational and Educational Services for Individuals
with Disabilities (VESID) is a state agency helping people with
disabilities return to work. To qualify, you must be disabled, but ready to
return to work, even part-time. VESID will assess your skills, and work
with you on a plan. They can help you switch jobs if your health would keep
you from returning to the same field. Depending on your finances, they may
subsidize tuition in a vocational school or even a four-year college (only
state and city colleges). Transportation, fees, books, and materials can
also be supplemented by VESID.
Disliking your former job is not grounds for retraining. If you
disliked your job, maybe vocational counseling and testing could help you
choose another. Columbia and New York Universities offer both to the
public. (See Myth Busting Resources on page 23 to contact VESID.)
Myth # 6: You shouldn't worry about your disability check. You're
If you're on Social Security Income (SSI), as soon as you earn more than
$484 a month, SSI and Medicaid end. In New York, you can reapply for
Medicaid alone if your income is below $575 a month. Call the Social
Security Administration (SSA) Infoline for information on other states (See
Myth Busting Resources on this page to contact SSA). You can earn up to $65
a month without having your check trimmed. After that, your check is
decreased by $1 for each $2 you earn. Once your income is more than $484,
SSI stops. In the next 12 months, if you need to return to SSI, call the
SSA, and (in most cases) in two months your checks will begin.
On Social Security Disability (SSD), you have a one-time trial work
period of nine months. During that time you can earn as much as you want
while receiving your total SSD check. In fact, you are entitled to receive
your full benefit for three months after your trial work period ends. You
can start and stop your nine months just by calling SSA. After nine months
your file will go into suspension for three years. During this time, any
month your earnings fall below $500, you get an SSD check; if you stop
work, call SSA to restore your benefits within two weeks.
Can you receive disability coverage from previous employment? It
varies, so read your policy carefully. Usually, a return to your former job
will cause payments to end. If full-time work is too strenuous, within the first six months you can usually just get back on disability. If you return to w
ork with a new employer, your coverage ends permanently. If your new
employer has disability coverage, you will probably be covered, but read
the policy. All new employees have to work for a certain period, generally
a year, before qualifying for coverage. Once you qualify you'll face an
additional pre-existing condition waiting period, which could be another
year, before being eligible to go out on disability again. If you try to
make a claim before both periods are up, you'll lose out completely.
Private disability coverage you buy yourself, independent of any
job-based coverage, is the simplest. When you are working, you pay
premiums. When you aren't working, you get checks. Check your policy for
"partial disability coverage." This allows you to work part-time and
receive a partial benefit, maintaining your income level as you try to work.
Not sure what's in your policy? Contact an AIDS service
organization or a certified financial planner to look over your policy.
They can contact your disability company and get the answers you need
without making them suspicious that you are considering a return to work.
Myth # 7: Going back to work will be easy.
"Start slowly," says John Hatchett. "It's one thing to have normal energy
when your time is your own. I worked part-time for two months, which was a
great way to check it out." Russell Saray agrees. "I really never was on
disability. My employer is extremely supportive. They allowed me to take
the time I needed, which gave me great peace of mind. I set my own pace in
coming back to a full day."
John was on disability for a year. "When I started working again,
the first month I was very tired in the evening. I really needed to rest.
Decide what you're capable of, and do half of it. It's better than
attempting three-fourths and failing. Don't underestimate what you're
attempting. Be good to yourself about time off, and guard your weekend."
These are just a few of the myths that have been floating in the
minds and spoken from the lips of people living with HIV -- and a few of
the responses that address them. If you have a myth that you would like to
bust, or have anything that you would like to add to help to deflate the
ones mentioned in this article, feel free to write Body Positive. They will
be published as space allows. In the meantime, don't believe everything you
hear -- or read. When you can, use reputable resources to gather your own
evidence and conduct your own research.
Karin Timour is a freelance writer, trainer, and consultant. The
former Director of Education at Body Positive, she is now Director of the
Empire Blue Cross Conversion Project at New Yorkers for Accessible Health
Back to the May 97 Issue of Body Positive Magazine.