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HIV and the Recession: Living Well in Tough Times

By Heather Boerner

Winter/Spring 2010

Table of Contents


Introduction

HIV/AIDS Hotlines

Centers for Disease Control and Prevention National Information Hotline:
1-800-CDC-INFO

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

New York State HIV Counseling Hotline:
1-800-872-2777

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.

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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."

Housing Help

Housing Assistance Resources

AIDS Emergency Fund (San Francisco)
415-558-6999

AIDS Foundation of Chicago
312-922-2322

Housing and Urban Development Section 8 Program
800-955-2232

Housing Opportunities for People With AIDS (HOPWA)
U.S. Department of Housing and Urban Development
800-333-4636 (Ask where to find HOPWA-funded organizations in your state.)

Housing Works (New York City)
877-296-9264

National AIDS Housing Coalition
202-347-0333

San Francisco AIDS Foundation Housing/Rental Subsidy Program
415-487-8000

When Dena Gray, 41, of Houston, Texas, was laid off from her job, she knew two things immediately. One was that she'd need help paying for her HIV care. The other was that she had to somehow pay her $850 monthly rent for herself and her 13-year-old daughter.

"I'm a praying person, so I said, 'OK, Lord, what do I do?'" she recalled. The answer? "Take it one thing at a time and deal with stability first."

That meant tackling housing before she started figuring out how to cover her health care. According to social worker Rice, there's a good reason for that priority.

"The biggest challenge to staying healthy with HIV and other chronic illnesses in New York City is housing," he said. "If you don't have appropriate housing, many things fall [into the gaps], even if you have insurance."

And that's not just true in New York. A 2007 review in the journal AIDS and Behavior found that housing stability was strongly and positively associated with adherence to antiretroviral regimens and the ability to keep appointments and follow up on medical care.

"When you lose your housing, it doesn't just mean losing shelter," said HELP/PSI's Reyes. "It means losing access to healthy food," since you may no longer be able to prepare your own meals. "Many times it means losing medications, because when you get thrown out of your home, your medications get thrown out, too," continued Reyes. "Or you end up in a shelter and someone may steal your medications."

But things do not have to get to that point. To help maintain housing stability so you can focus on your health, consider the following tips.


Act Fast

"It can be overwhelming when you're sick to get a really important piece of mail that contains critical information," said ALRP's Hirsh. "People think, 'I don't know what to do so I won't respond.'"

Instead of ignoring frightening news, invite an ally into the situation: Ask someone you trust -- a friend, family member, social worker, or financial benefits counselor -- to sit with you when you read a letter from a creditor or make a particularly intimidating call to your landlord. The good news is that most creditors and landlords just want to get paid. And they want to know you are not ignoring them.

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In some cases, saving your home from foreclosure may depend on catching your financial problems early, Hirsh continued. It can be hard to enroll in mortgage modification programs if you have let your home go into default for too long.

Other programs, like Section 8 -- the U.S. Department of Housing and Urban Development's low-income housing assistance program -- have waiting lists. The sooner you add yourself to the list, the more likely you are to get help when you need it.

But first, you have to acknowledge that your situation is serious. Gray found that she had to again face the fact of her diagnosis and admit that she needed help as much as anyone else. It wasn't easy for her; she has always worked for organizations that provide services for people with HIV/AIDS, but never used them herself.

"I just had to say to myself, 'OK, you now have to recognize that you're positive and you have to address this,'" she said. "There are a lot of us like that: We've not ever used the system for services before -- we just go get our medications and go home. I had to get over it real quick."


HOP To It

HIV and the Recession: Living Well in Tough Times
For Gray, the former executive director of an organization that fights homelessness, the answer to her prayers came from Housing Opportunities for People with AIDS (HOPWA).

HOPWA funds organizations around the country providing housing assistance for individuals with HIV/AIDS. These organizations do everything from offering short-term rent relief to paying a portion of rent so your money can go toward other expenses. Gray found an organization that would pay her entire rent for five months so she could concentrate on getting her health care covered and figure out where she would move at the end of her lease.

"I know this is literally saving my life," Gray said of the support of HIV service organizations. "I hate to have to use it, but I'm so glad it's still here."

But Gray found that there is a trick to getting assistance fast. "A lot of people call at the beginning of the month, and they find out all the funds for the month have been paid out," she said. "At least here in Houston, it's better to call between the 15th and the 30th so you can get in line to have your rent paid on the 1st."


Call an Emergency an Emergency

If you are close to losing your housing, there are emergency groups you can contact. For example, the San Francisco AIDS Foundation administers a housing subsidy program for HIV positive people on the city's housing waiting list, which is usually long.

San Francisco also has the AIDS Emergency Fund, designed to provide short-term help for low-income people with AIDS or disabling HIV disease. The program provides a one-time boost of $500 to cover rent, overdue utility bills, health insurance, or other critical expenses.


Health Care and Medications

When Mike (who asked that his full name not be used) was laid off from his job last year, his stress level rose and his frustration grew as he searched without success for new employment. But one thing he did not worry about was continuing his antiretroviral therapy.

"Medications would have been my biggest concern when I lost my job but, fortunately, my husband has incredible benefits with the city," said the 41-year-old San Francisco resident. "Since we registered as domestic partners and got married last year, I've been on his insurance, and it's been an amazing gift."

Registered domestic partners and/or spouses may be able to take advantage of their employed partner's insurance coverage; ask your partner to speak with his or her employer's human resources department to find out what coverage is available.

If you are not as fortunate as Mike, there are still many ways to get your medications covered. And there's good reason to do so: a growing body of evidence indicates that treatment interruptions (or "drug holidays") can be hazardous, leading to declining immune function as well as a host of non-AIDS conditions linked to resurgent HIV replication.

"It's not a good way to save money, especially in the long run, because you get sick and it's much more difficult to work or deal with whatever you need to in the rest of your life," said nurse practitioner Reyes.

If you're like many people with HIV, you have to advocate for yourself most strongly in the health care system when you feel least able to do so: when you're sick, you're stressed, and you're worried about the future.

But it is important to take even the smallest step you can toward help. Maybe it's as simple as asking your doctor for a referral to a comprehensive clinic that might better suit your budget, said Steven Boswell, MD, CEO of Fenway Health in Boston.

"To have an established relationship with a good clinician who is connected to resources can be tremendously helpful in difficult times like these," he said. "When you have the right provider who knows what he's doing technically with regard to caring for someone with HIV and also understands the available resources and how they can be brought to bear to help someone, that's critical to keeping that care seamlessly intact."

"Seamless" is the key word. Your ability to monitor your health does not have to be dependent on your ability to pay.


COBRA Coverage

COBRA -- the Consolidated Omnibus Budget Reconciliation Act of 1985 -- is a federal law that allows people to stay on their employer's health plan after being laid off. They must pay the full cost, however, and COBRA premiums can be very expensive. COBRA eligibility typically lasts 18 months, though some states mandate extended coverage; California's Cal-COBRA, for example, extends coverage for an additional 18 months.

As part of the 2009 American Recovery and Reinvestment Act (the economic stimulus package), the federal government agreed to pay up to 65% of COBRA premiums for qualifying individuals whose employment ended between September 2008 and December 2009. People who declined COBRA coverage because they could not afford it when they were laid off were given another chance to accept coverage.

With or without the subsidy, COBRA may be a good deal compared with available alternatives. "It's not cheap, but it's less expensive than an individual policy in New York, by far," said Alexandra Remmel, Assistant Director of Coordinated Care at Gay Men's Health Crisis.


Tap ADAP

The AIDS Drug Assistance Program pays the cost of medications to treat HIV and related conditions for low-income individuals. Funding comes from both the federal government and the states, and states determine what services to cover. In some states, ADAP covers more than just medications: In New York, for instance, it may also pay for HIV-related doctor visits and COBRA or other insurance premiums and co-pays; in California, ADAP may help pay Medicare Part D premiums.

Even if you think you do not qualify for ADAP because your income is too high now or was too high before you lost your job, think again. Eligibility varies by state, and ranges up to about 400% of the federal poverty level, or more than $40,000 for an individual.

"One of the things about ADAP is that you can have some assets," said financial benefits counselor Novogrodsky. "You have to be HIV positive, but you don't have to have AIDS. And even if you earn more than $43,000 a year, you can still get some coverage. You may have to pay a co-pay for your medications."

Signing up for ADAP is not like the arduous process involved in applying for Social Security Disability Insurance or other federal or state-funded programs. And once you are signed up, the program kicks in fast, typically within 24 hours.

Take Drug Companies Up On Their Offer

ADAP is not the only game in town when it comes to medication assistance. Eligible individuals can also get discounted or even free drugs from the companies that make them. Most pharmaceutical companies offer patient assistance programs for their antiretroviral drugs. (See table below.)

Pharmaceutical company programs often have very stringent requirements for income and documentation. Be sure to pay special attention to them and ask for help from company program representatives to be sure you have everything in order. In some cases, your doctor will have to obtain drugs on your behalf.

Patient Assistance and Co-Pay Programs

Depending on your income, you may be eligible to receive antiretroviral medications at low or no cost through pharmaceutical companies' patient assistance programs (PAPs), or you may qualify for assistance with pharmacy co-pays for certain anti-HIV drugs. Call the numbers or check the websites below for more information.


CompanyDrugs CoveredContact information
Abbottlopinavir/ritonavir (Kaletra)
ritonavir (Norvir)
800-222-6885
www.rxassist.org
Boehringer Ingelheimnevirapine (Viramune)
tipranavir (Aptivus)
800-556-8317
http://us.boehringer-ingelheim.com/about-us/philanthropy/patient-assist.html
Bristol-Myers Squibbatazanavir (Reyataz)
efavirenz (Sustiva)
tenofovir/emtricitabine/efavirenz (Atripla)
Atazanavir and efavirenz PAP: 888-477-2669
www.pparx.org

Atripla PAP: 800-290-4767

Co-pay program: 888-281-8981 for atazanavir and efavirenz; 866-784-3431 for Atripla

Gileademtricitabine (Emtriva)
tenofovir (Viread)
tenofovir/emtricitabine (Truvada)
tenofovir/emtricitabine/efavirenz (Atripla)
Emtricitabine, tenofovir, and Truvada PAP: 800-226-2056
www.gilead.com/us_advancing_access

Atripla PAP: 800-290-4767

Merckindinavir (Crixivan)
raltegravir (Isentress)
800-850-3430
www.merck.com/merckhelps/patientassistance
Rocheenfuvirtide (Fuzeon)877-757-6243
www.rxassist.org
Tibotecetravirine (Intelence)
darunavir (Prezista)
PAP: 800-652-6227

Co-pay program: 866-836-0114
www.intelence-info.com/intelence/patient-assistance.html
www.prezista.com/prezista/patient_assistance.html

ViiV Healthcare (antiretroviral drugs formerly produced by GlaxoSmithKline and Pfizer)3TC (Epivir)
3TC/AZT (Combivir)
abacavir (Ziagen)
abacavir/3TC (Epzicom)
abacavir/3TC/AZT (Trizivir)
AZT (Retrovir)
delavirdine (Rescriptor)
fosamprenavir (Lexiva)
maraviroc (Selzentry)
nelfinavir (Viracept)
866-728-4368
www.bridgestoaccess.com


Bundle Up

Some clinics, like Fenway Health, receive government grants and private donations that allow them to offer low-cost or free services, whether the client has health insurance or not.

Make things easy on yourself: Look for a group that offers many services together. For instance, the San Francisco AIDS Foundation offers financial benefits counseling, a rent subsidy program, and support groups such as Black Brothers Esteem and El Grupo. In New York City, Gay Men's Health Crisis offers support services for men and women, and offers a free food program as well as yoga and massage. Agencies in many other cities, including HELP/PSI, AIDS Project Los Angeles, the Howard Brown Health Center in Chicago, and the Whitman-Walker Clinic in Washington, DC, also offer multiple services.

The advantage of connecting with one of these agencies is that you can talk to a single person who can direct you to several different services, rather than wading through the paperwork of each program individually. And the fewer places you have to shuttle between, the more likely you are to keep your appointments and get the help you need.


Health Care and Benefits Resources

The Access Project (listing of ADAP, Medicaid, and other benefits resources by state)

AIDS Project Los Angeles
213-201-1365

Fenway Health (Boston)
617-267-0900

Gay Men's Health Crisis (New York City)
212-367-1500

HELP/PSI (New York City)
718-681-8700

HIV Uninsured Care Program (New York State)
800-542-2437

Howard Brown Health Center (Chicago)
773-388-1600

Positive Resource Center (San Francisco)
415-777-0333

San Francisco AIDS Foundation
415-487-3000

U.S. Department of Health and Human Services health center database

Whitman-Walker Clinic (Washington, DC)
202-745-7000


Mental Health

According to Michelle Latimer, a psychiatric nurse practitioner at HELP/PSI in the Bronx, up to three out of every four people with HIV also experience depression, anxiety, or other mental health issues. And that number is likely to go up as the economy falters, Fenway's Boswell predicted.

"HIV positive people are a mirror image of the larger community," he said. "Substance abuse is an issue among the larger community, and so it is with people with HIV. And when people are under huge stress, as we are whenever there's a financial downturn, there's an increase in use of substances. The same goes for insomnia and depression."

Depression and anxiety have been found repeatedly to be barriers to continued antiretroviral treatment adherence for a wide demographic range of people living with HIV. The good news is that help is available, even if you have little money.


Start With Your Doc

"A lot of people may not think to speak to their primary care provider for therapy," said Latimer. But often, doctors can offer referrals to therapists and other mental health care providers, and if you let them know your income limits, they may be able to help you find someone you can afford. In addition, primary care providers can prescribe medications to treat anxiety or depression.


Low-Cost Options

Mental Health Resources

AIDS Project Los Angeles Mental Health Services
213-201-1600

AIDS Action Committee of Massachusetts
617-437-6200

Callen-Lorde Community Health Center Mental Health and Social Services (New York City)
(212) 271-7206

Howard Brown Health Center Behavioral Health Services (Chicago)
773-388-1600

New Leaf: Services for Our Community (San Francisco)
415-626-7000

Many cities have specialized mental health clinics serving people with HIV/AIDS. These may be separate community agencies or departments within larger AIDS service organizations. In San Francisco, for example, New Leaf -- an agency serving the lesbian, gay, bisexual, and transgender communities -- runs an HIV mental health program on a sliding scale (meaning individuals pay according to their income); New Leaf also offers support groups and substance use programs. If you are eligible for Medicaid, that program can qualify you for mental health services through HIV organizations.

Schools are another place to seek lower-cost mental health services. Look for colleges or professional schools that train marriage and family therapists, psychologists, and counselors, Latimer suggested.

"There, you'll find new therapists getting their Doctorate or Master's degree looking to get their final clinical hours," she said. "It's low cost or no cost, and you get a very enthusiastic provider."

You can contact schools directly and ask them if they have PhD candidates who might be looking for clients. As with other services, good timing can help you find the right therapist. In the fall, student therapists are often seeking clients and offering low or reduced rates, added Latimer.


Buddy Up

You do not have to rely only on professionals to help lift yourself out of depression and prioritize your health. Family, friends, coworkers, and others can play an equally important role. In fact, a 2006 study reported in the journal AIDS Care found that choosing a support partner to help maintain adherence to medication regimens and cope with HIV disease significantly helped participants stay well.

"You have to look once again to those things that money can't buy -- for example, healthful relationships with other people," said Phil Johnson, Ed.D., Adjunct Professor of Health Education at Teachers College, Columbia University, in New York City. "If you have that one friend whose shoulder you cry on, and for whatever reason when you're done talking you feel better -- those are the people to maintain relationships with."


Volunteer

It may seem counterintuitive: When you're in need and hurting, you may feel like you have nothing to give. But research has repeatedly shown that the more people help others, the better they feel about themselves, and the more optimistic they are in general.

Johnson recommends looking into peer education and support programs, which are usually free. There, you can meet people who've dealt with the same problems you are facing. And then you can turn around and help other people who are currently struggling.

"Imagine how useful you can be [to] others like yourself," Johnson said. "They have the same thought processes you did. You're there to help them through [a difficult] time and provide a very meaningful service."

Or, as HELP/PSI's Reyes put it: Don't just look for help; provide it. "The best help usually seems to come from those who have suffered the most, because they can recognize the quickest, best way to get you out of it," she said, recalling a time when neighbors discreetly helped her family hide from their landlord when the rent was due. "If you can hook up with someone who needs you -- or if you can hook up with someone like that yourself -- you can find help, even if you are broke."

Eating and Sleeping Well

HIV and the Recession: Living Well in Tough Times
Your mother was right: Eat well and get enough sleep, and you'll feel better. This is a rule of thumb for everyone, of course. But for people with HIV, these simple daily functions can help maintain health. Plus, they are inexpensive.

"That is, without a doubt, one of the most important aspects of maintaining good health, period," said Johnson. "Eating well [and] sleeping enough hours are linked to a healthy immune system."

But how many of us do that -- HIV positive or not? Johnson admits he's often up late and then awake "as soon as the sun peeks up over the horizon."

For many people, the key to incorporating good basic nutrition into their lives is to make small changes that become a permanent part of their routine, according to Cade Fields-Gardner, director of services for the Cutting Edge, a Chicago-based organization dedicated to improving nutrition for HIV positive people.

"The good news is that the body is a pretty amazing thing. If you take care of it at all, it will take care of you," said Fields-Gardner, who has specialized in HIV care for 22 years. "But, as with adjusting to a pill regimen, it may take a while to adapt to lifestyle changes."

You can do it, and it doesn't have to be painful if you take things a step at a time.


Sleep Well

Let's start with that elusive eight hours of sleep. For everyone, those hours may be interrupted by worry, depression, work, or children. HIV positive people have an added challenge: Some HIV medications can cause insomnia or poor sleep, including the widely used efavirenz (Sustiva, also in the Truvada and Atripla combination pills).

Don't be afraid to speak up about insomnia and ask your clinician about other antiretroviral options that will let you get much-needed rest.

"Many times, you'll get started on a medication and the side effects will be strong," said Fenway's Boswell. "But they usually gradually resolve over a period of weeks. If that doesn't happen, especially if there are more options, your clinician [can] move you off that medication, because of the need for sleep."

It also helps to create a routine. Reyes said staffers at HELP/PSI often work closely with clients to help them develop new bedtime routines that do not include working or playing on computers, watching TV, or other late-night activities. It may be painful at first to give up your evening entertainment, but making small changes -- such as not watching programs that rile you up just before bed, or turning the lights low before sleep -- will eventually take hold and help create healthier sleep habits, she said.


Eat Real Food

Resources for Healthy Eating

Nutrition Works (Boston)
617-437-6200

USDA Online Farmer's Market Search

USDA Supplemental Nutrition Assistance Program
1-800-221-5689

Women, Infants, and Children (WIC) Program of the USDA Food and Nutrition Service
703-305-2746

For Mike, one of the surprising side effects of losing his job has been that he is eating at home more often and eating fewer fried foods. The changes, though, have mostly been small.

"I gave up french fries and started eating more salads," he said. "Instead of eating donuts, I am eating fat-free licorice."

It's not perfect, of course, but Mike's approach is still a good one, said Fields-Gardner. And there's a good reason to get started today. For HIV positive people, just having the virus changes the body's metabolism.

"HIV is a chronic inflammatory disease, which it has in common with rheumatoid arthritis, Crohn's disease, and others," explained Fields-Gardner. "What chronic inflammation does is change the way muscle and fat are metabolized in your system. These changes affect muscle, bone, and other tissue."

Chronic HIV infection also changes how sensitive your body is to natural hormones, which can lead to increased resistance to testosterone, growth hormone, and, notably, insulin.

Insulin allows glucose from food to enter cells, where it is used as a source of energy. When insulin resistance develops, cells do not respond properly to insulin, allowing glucose to build up in the blood. In other words, the body has to work harder to come down from a "sugar high." Over time, insulin resistance can progress to prediabetes or even diabetes. (For more information, see "HIV/AIDS and Diabetes: Minimizing Risk, Optimizing Care" in the Winter/Spring 2009 issue of BETA.)

Another issue for people with HIV is altered fat metabolism. Chronic HIV infection, antiretroviral drugs, or a combination of the two can lead to abnormal levels of cholesterol and triglycerides in the blood, which in turn increase the risk of cardiovascular disease. While it's good advice for everyone, it is especially important for people with HIV to avoid a high-fat diet and maintain a healthy weight.


Build a New Rut

If you're a fast-food junkie or love an occasional sugary snack, no need to fear: Eating well with HIV does not have to mean resigning yourself to a life of brown rice and raw foods.

Like Mike, you can take small steps toward better-for-you treats. If you love sugary soda and eat fast food every day, maybe start by choosing beverages with less sugar and switching to some of the healthier items on the menu, suggested Fields-Gardner. If you crave steak, reduce the portion size while adding a side dish of healthier (and more budget-friendly) foods such as beans or lentils. This can help you get accustomed to new flavors while you learn to prepare and enjoy unfamiliar foods.

"I like the idea that people don't live nutrition," said Fields-Gardner. "You figure it out, you build a good rut with healthy foods, and then you move on with your life."

To build that new rut, you have to stick with small changes over a period of time. It can take three days for your body to establish a new pattern, but months for your brain to adjust to those changes and for them to become ingrained, she said. During that time, don't sabotage yourself by attempting unsustainable major changes to your diet.


Try Home Cooking

HIV and the Recession: Living Well in Tough Times
"Not everyone is going to want to take the Julia Child approach," Fields-Gardner said. "If someone is used to visiting a restaurant for dinner every day for the last ten years, asking him to make his own stock from scratch is kind of crazy."

But there is a happy medium. Some organizations, like HELP/PSI, offer cooking classes for HIV positive people, so they can learn inexpensive ways to prepare nutritious meals at home.

One of the best options, said Shane Convery, Program Director for San Francisco's Immune Enhancement Project (IEP), is stews. His program teaches people how to cook a flavorful and healthful stew, even if all they have to work with is a hot plate in a single-room-occupancy hotel. Stews, he added, end up being nutritious and cheap because they're mostly made from beans and inexpensive cuts of meat.

If even this seems like too much effort, there are plenty of healthy options that don't require any cooking at all, for example homemade sandwiches of lean meat and vegetables, or whole grain cereal with low-fat milk.

In addition, preparing food at home puts you in control of what ingredients go into your meals, rather than leaving those choices up to restaurant chefs and fast-food cooks. "The side effect of eating at home is that, yes, it's less expensive, but you make better food choices, as well," Convery said.


Go Farm Fresh

Farmer's markets can be a cornucopia of healthy foods. But it turns out they can also be cost effective, said Convery. In a survey conducted recently by IEP, produce cost slightly less at farmer's markets than at supermarkets. And because they weren't shipped across the country and stored in warehouses for weeks or even months, the fruits and vegetables offered at farmer's markets are fresher and tastier.

Many farmers are willing to negotiate prices, especially if you visit their stalls late in the day as they're packing up. That way, they don't have to haul unsold produce home and you don't have to pay full price.

And you can use food stamps at many farmer's markets. Food stamps and food pantries were created for people who need healthy food and cannot afford to buy it on their own. People who are permanently disabled are automatically eligible for the U.S. Department of Agriculture's (USDA) food stamp program, but must not earn more than 165% of the federal poverty level. Visit the USDA's searchable farmer's market database (listed in the table above) to locate markets that accept food stamps and other vouchers for nutritional assistance.


Assemble Your HIV Dossier

If you have never accessed the HIV health services system before, you will learn that signing up for services requires an intake visit where you present documentation of your diagnosis, income, and residency -- among other things -- in order to get connected and start receiving care.

Before you seek services, do yourself a favor and put together a notebook with the required documentation, including:

  • A photo ID
  • Proof of residency (such as utility bills with your name and address on them)
  • Letter of HIV diagnosis from your health care provider
  • Lab results from the past six months
  • Proof of income (pay stubs from the past three months if you are currently working, or a W-2 form from the previous year)
  • Rent receipts, if you are seeking assistance with rental expenses said. During that time, don't sabotage


Complementary Therapies

Despite Michael's challenges, he's kept up one thing: his yoga practice.

"I like a particular type of yoga called hatha yoga," he said. "It's very meditative, slow, quiet." Although Michael also enjoys other, more rigorous forms of exercise, he finds that yoga offers extra benefits. "It's not only good for you physically; it's great mentally, as well. It can be a way to calm your mind. There are so many benefits other than physical."

For years, yoga has been shown to counter chronic stress, depression, and anxiety. Emerging research is beginning to suggest that the flood of the hormone norepinephrine (also known as noradrenaline) that comes with intense stress allows HIV to replicate more rapidly in the body. And studies suggest that yoga may help staunch the flow of norepinephrine throughout the body.

Other studies have found that yoga may be helpful in coping with medication side effects such as peripheral neuropathy. This makes yoga particularly beneficial, as research shows that persistent side effects from medications are a good predictor of poor treatment adherence.

Complementary Therapy Resources

American College of Traditional Chinese Medicine (San Francisco)
425-282-9603

Desert AIDS Project (Palm Springs)
866-331-3344

Immune Enhancement Project (San Francisco)
415-252-8711

Links to information on low-cost or free yoga classes for HIV positive people in several states

Other complementary therapies, such as acupuncture and massage, may offer similar relief. "The basis of all this is to achieve a balance," said IEP's Convery. "And because each thing you do is up to you, complementary therapies really empower individuals to make their own decisions. At a time when it seems like so little is up to the individual, a sense of control can be very healing."

But how can you find yoga, acupuncture, and other complementary therapies that you can afford? After all, at $15 per yoga class and more than $100 per acupuncture session, the cost can be prohibitive.


Ask Your One-Stop Shop

Many one-stop HIV/AIDS centers such as HELP/PSI and Gay Men's Health Crisis offer complementary therapies to their clients. If they don't, they may be able to direct you to local agencies or groups that do offer those therapies for low rates or free.

For instance, the Desert AIDS Project in Palm Springs, California, provides yoga classes tailored to the symptoms and immune health of its HIV positive clients. In San Francisco, the Integral Yoga Institute offers affordable classes for people with HIV/AIDS, and offers work exchange. Call your local organization and ask if they offer something similar.


Work it Out

Acupuncture is usually expensive, but not at IEP's drop-in clinic. Three days per week, the organization offers acupuncture for a donation -- anywhere from $5 to $20. "But no one will be turned away if they can't afford it," said Convery. "We'll gladly accept $4, $3, $2."

"Some of us are willing to create work exchange plans with people who'd like acupuncture but can't afford to pay for it," Convery said. "We're certainly thrilled to have the volunteers -- and I think every organization right now is thrilled to have that. What you do when you volunteer can be tailored to your energy levels, and it's a great way to get new skills, be active, and get out."

As with newly trained mental health service providers, many senior-level acupuncture students and massage therapists are looking for practice. In San Francisco, the American College of Traditional Chinese Medicine has student clinics that offer the same services others charge full-price for, but at discounted rates. Students are supervised by experienced practitioners to ensure high-quality care.


Getting Help: Dispelling the Myths

Myth: "My needs aren't as important as the needs of others."

Fact: If you're HIV positive and have never needed services before because you were employed and received health insurance through your employer, you may think that services offered through the San Francisco AIDS Foundation, AIDS Legal Referral Panel, Positive Resource Center, or even ADAP are designed for people who have less money or more advanced HIV disease than yourself. You might feel guilty for accessing services. Don't, said Steven Boswell. They're for you as much as anyone else.


Myth: "I don't qualify because I make too much money."

Fact: If you earned a lot last year but have been laid off this year, you may still qualify for many services. ADAP, for example, covers people with incomes several times the federal poverty level. Don't let past income get in the way of seeking the help you need today.

"What I tell people is that the services are here for people just like you," said Ellen Novogrodsky. "Especially when it comes to medical costs, it can be so expensive, and that's why the AIDS Drug Assistance Program exists. You shouldn't feel uncomfortable accessing services."


Myth: "If I am seen entering an HIV clinic, people will know that I'm HIV positive. Keeping my HIV status private is more important."

Fact: If you're struggling with the stigma of an HIV diagnosis, you might feel like avoiding public clinics and other centers that offer low- or no-cost HIV services. That may be a preference you can't afford, however, if your current finances make your private doctor too expensive, said Phil Johnson.

"The fact is, you may meet someone who has already had experience with obtaining services and is successfully tapped into available resources," he said. "And you may find it easier to navigate the health care maze or obtain the quality of care you need by working with people who have the same diagnosis."

Conclusion

As the service providers and HIV positive individuals interviewed for this article can attest, people living with HIV do not have to struggle hopelessly during the current economic downturn -- there are resources for assistance with everything from food to housing to medication to mental health and well-being.

In tough times, the keys to staying healthy with HIV include reaching out for help -- even if you only need it temporarily -- and getting creative about accessing resources that can help you meet your needs. Help may be as near as your city's AIDS services organization or the website for a local community-based agency.

"It's so amazing, the incredible work and energy people are putting in from all sectors to help HIV positive people thrive and to keep community organizations going" during the current economic crisis, said IEP's Convery. "It's a very difficult time, but there's something inspiring about the kind of creativity we are putting in. That's what it's all about: Creativity and community are the two tricks to getting through this."

Heather Boerner is a San Francisco-based medical writer whose articles on HIV and wellness have appeared in Yoga Journal and other publications.


Selected Sources

  1. Cinti S. Adherence to antiretrovirals in HIV disease. The AIDS Reader 10(12):709-17. December 2000.
  2. Cooper V and others. The influence of symptom experiences and attributions on adherence to highly active anti-retroviral therapy (HAART): a six-month prospective, follow-up study. AIDS Care 21(4):520-8. April 2009.
  3. Gordillo V and others. Sociodemographic and psychological variables influencing adherence to antiretroviral therapy. AIDS 13(13):1763-9. September 10, 1999.
  4. Leaver C and others. The effects of housing status on health-related outcomes in people living with HIV: a systematic review of the literature. AIDS and Behavior 11(Supplement 6):85-100. November 2007.
  5. Reisner S and others. A review of HIV antiretroviral adherence and intervention studies among HIV-infected youth. Topics in HIV Medicine 17(1):14-25. February/March 2009.
  6. Shapiro D. Yoga as a complementary treatment of depression: effects of traits and moods on treatment outcome. Evidence-Based Complementary and Alternative Medicine 4(4):493-502. December 2007.




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