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HIV and the Recession: Living Well in Tough Times

Winter/Spring 2010

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Table of Contents


HIV/AIDS Hotlines

Centers for Disease Control and Prevention National Information Hotline:

California AIDS Hotline:
1-800-367-AIDS or 415-863-AIDS

New York State HIV Counseling Hotline:

Project Inform Treatment Hotline:
1-800-822-7422 or 415-558-9051

A few months ago, Michael sat at Ellen Novogrodsky's desk at the San Francisco AIDS Foundation, resigned and frustrated. He did not know what the financial benefits counselor could do for him, but he figured it was worth a shot.

He'd already explored several other avenues -- Social Security, advice from his doctors, etc. -- all to no avail. The 48-year-old graphic production artist was still unemployed -- after being laid off in February -- and was barely able to pay his rent. He could not afford the extension of his employer-based health insurance through COBRA.

Once, bleakly curious, he visited his pharmacy to find out how much it would cost for him to buy all his HIV drugs at retail prices. The total came to more than $3,000 per month. Michael left the pharmacy without his medications, and he stayed off antiretroviral therapy for four months.

Physically, Michael felt miserable: His bones ached from head to toe. He woke in the morning feeling his muscles weakening. He looked in the mirror and saw his face drawn from stress.

Emotionally, he was struggling with depression exacerbated by fatigue related to his untreated HIV, as well as the frustration that came with looking for answers and coming up with useless -- or worse, conflicting -- information that led nowhere. Michael had earned too much money at his job the previous year to qualify for many programs, and he found himself feeling sicker and more despondent.

"Oh my God, how am I ever going to get out of this feeling of being completely sick?" he remembers asking himself in the spring. "There comes a point where you just get sick of being sick. Sometimes you have to fight really hard just to keep fighting."

But Michael did fight, and eventually, he found his way to Novogrodsky's desk -- and a salvation of sorts. Novogrodsky peered into her computer screen and came back with an answer that was as surprising as it was quick: Michael need not have skipped his meds at all. He qualified for help through the AIDS Drug Assistance Program (ADAP), and it would pay almost all his costs.

Novogrodsky sent a quick fax to Michael's doctor, and a few hours later Michael walked out of the same pharmacy with all his medications, having paid just $40 for two heart disease drugs not completely covered by ADAP.

"I broke down in tears," he said, still slightly stunned. "For months, people kept giving me the wrong information. I kept thinking I could wait and figure it out on my own, but I couldn't. And then here is this woman at the Foundation ... who sat down and looked at her computer and got me my medications back."

Across the country, HIV positive people like Michael are discovering the same thing: In the midst of a recession, grappling with the devastating stress of lay-offs, lost health insurance, and reduced work hours -- not to mention what those stressors can do to viral loads and CD4 cell counts -- there is help and hope. It is possible to make your health a top priority, even as you navigate the unknowns of the current economic downturn.

"There's more help out there than you can imagine," said Darcel Reyes, a nurse practitioner with HELP/PSI, an HIV primary care and support program in the Bronx. "You don't have to wait for the trouble to start to make a plan. Contact an agency about what you know is going to happen. Get signed up with COBRA if you need it. Find a clinic that's willing to work with you. Start to talk to staff there about how you're going to maintain your health and pay for your health."

Easier said than done, right? It needn't be. The first thing to do is assess your situation, and then make a plan to get the help you need at a price you can afford.

"For chronic illnesses like HIV, where there are so many things involved in maintaining health, the more psychosocial issues like housing or insurance or poor nutrition you have to deal with, the more limited you are in making HIV your number-one priority," said Alan Rice, LCSW, Co-Director of Social Work at the Center for Comprehensive Care at St. Luke's and Roosevelt Hospitals in New York City. "Health can quickly fall to number five or six. Our goal is to keep it at number one or number two."

So how do you keep your health a top priority even when foreclosure, job loss, and insurance changes threaten to derail you? Consider these experiences of people like yourself and check out the resource lists for your most urgent needs.

Don't Delay

From where Novogrodsky sits, the biggest threat to the health of people with HIV is the clock. The longer people wait to seek help, the more likely it is that problems such as credit card debt, health care costs, prescription expenses, and eviction or foreclosure will encroach on their ability to manage their HIV health.


Indeed, studies going back more than a decade show that HIV positive people who struggle with depression, lack of social support, and issues such as substance use find it harder to focus on taking their medications and maintaining their health.

"The worst is when people spend every last penny they have on their medications, when they could have signed up for ADAP," Novogrodsky said. "Lots of people spend all their money before looking for help, but getting that help early provides so much stability."

So before you dip into your nest egg, raid your 401(k), or, worst of all, miss your medical appointments and stop taking your medications, call an HIV/AIDS hotline and find out what organizations in your area offer financial counseling. Many groups provide advocates, social workers, or caseworkers to help sift through what may be a laundry list of concerns and repercussions from the economic slump.

These issues may be tangled up in your mind, but with the help of someone who has experience navigating the dizzying array of HIV services and their eligibility requirements, you can figure out which problem needs attention first and how to take care of it, said Bill Hirsh, Executive Director of the AIDS Legal Referral Panel (ALRP), which offers low-cost or free legal services to people with HIV in the San Francisco Bay Area.

"If someone comes into our office because they have a housing issue, we have to ask more deeply about it," he said. "Maybe they are having housing issues because they don't have an income. Or maybe they have higher medical bills and didn't pay their rent. Maybe there's a way for us to work on getting those medical bills addressed so they can avoid that issue with their rent in the future and work out a repayment plan."

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This article was provided by San Francisco AIDS Foundation. It is a part of the publication Bulletin of Experimental Treatments for AIDS. Visit San Francisco AIDS Foundation's Web site to find out more about their activities, publications and services.
See Also
More on General Financial Planning

Reader Comments:

Comment by: Topaz (Ohio) Sun., Oct. 24, 2010 at 11:26 pm UTC
Thanks bearby for the info. Unfortunately there is only 1 ASO that serves my county. The one that I have been trying to deal with. I pretty much have begged the case manager to help me. She has not told us that she doesn't have the funds. She told us that we were a "bad investment". Told me to go back to work(I am on doctors orders to be off work). I think that she is very unprofessional. I live in a rural area so there are not many resources. I have made calls to the United Way for referrals to places that might be able to help. They say that there are no funds available in my county. My mother passed in July. My relatives live in other states. As far as friends, I don't really have any. I am making phone calls everyday to find some help.
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Comment by: bearby (Alabama) Fri., Oct. 22, 2010 at 9:12 pm UTC
Honey first thing is realize that many of us have been in very much the same boat in our lives !
Now first thing is to rally your troops ( meaning family & friends) tell them of the plight your going thru and that the possible consequences is them having to house both of you or watch as you both end up in shelters .
Now about the meds head right on over to this web site and check for the qualifacations that might be needed to get all your meds taken care of for free .
Next thing is the begin checking with all the local aso's ( Aids Service Orgiznations ) in your area and just plain ask if they have any type of program that will help with housing assistance ( I know I have had to avail myself of such services in the past and over a year's time had my home payment made by them three times so that might be a way out of the current situatin for a while until you can get better situated .
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Comment by: Mike (Cleveland) Thu., Oct. 21, 2010 at 3:01 pm UTC
National Health would solve the medical issue for everyone once and for all. Thanks for nothing OBAMA
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Comment by: Topaz (Ohio) Sun., Oct. 17, 2010 at 12:31 am UTC
This is all good if you live in a big city. I have worked for the past 13 years. I have been off work since April on short-term disability from the company. I was receiving full pay until July when they denied my claim. I have not received any pay since. I have a lawyer working on that. My fiancÚ is also poz and on disability. We have been living off $1224. My mortgage on my house is $800, not including fuel oil and electricity. Now the company sent me a bill for $800 for my premiums on my insurance that is due in November. I tried to qualify for PIPP and HEAP but they count my income for the year so I don't qualify. My electric is behind and I have 1 extension left. Also my fiance's Medicare part d payment hasn't been paid through the ADAP. He is in jeparody of losing that. Now for the kicker. I went to my case manager for HOPWA assistance and premium assistance. I started asking for help before I lost my income. She said that they would not help with mortgage or electric because I was not able to assure the agency that I would not be in the same situation the next month. But she said that if we paid the $800 premium for my health care and the $600 for his Medicare D, she would pay the mortgage and the electric. Hmm, kinda hard to do with $1224, when that adds up to $1400. I don't think i should have to bargain to receive help for the delays and the mistakes she made in managing our cases. So I sit here in my house with no heat when the temps are 40 degrees outside, makes it about 60 in the house. Makes me just want to move to Florida and screw the meds. At least would die warm.
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