She's always wanted to be a "Brooke," so that's what we'll call her. Not much has gone her way in the last decade, and she doesn't think everyone at church needs to know the details of her misfortune. So let her be Brooke.
Make that Brooke, R.N. In the late 1980s, after she was laid off from a bookkeeping job, she went to nursing school at the Community College of Allegheny County. A divorcee who'd already lost a child, she says nursing school "made me feel young. I was with all of these kids!" In September 1992, at age 47, she received her nursing license. She still pays the biennial $45 renewal fee, though she's never worked in the profession, other than pro bono for a few dying men -- starting with her second child.
Shortly after she got her license, Brooke's son was diagnosed with brain cancer. In September 1994, she was raped. Her son died three months later, when he was just 31. "That was too much of a blow for me," she says. "I was like, 'God, what are you doing?'"
In March 1995, Brooke got back the results of a post-rape blood test. Her assailant had infected her with the Human Immunodeficiency Virus, or HIV, which develops into AIDS when it weakens the immune system enough for other diseases to take hold. She gave up her plans to enter the nursing field. By that time, she says, "I didn't know what I was grieving about. I was upset about everything."
Before 1994, Brooke didn't think much of pills. "I didn't take anything," she says. "You couldn't even get me to take a vitamin." Now she's 60, and things are different. These days, she says, "I live around the pill schedule."
Brooke's HIV drugs, AZT and 3TC, keep the virus in check, but wreak gastrointestinal havoc. She takes Prilosec and, sometimes, Zantac to control stomach problems, and Lomotil to stop diarrhea. Trazodone stops the shakes she gets due to nerve damage from the HIV drugs. Lexapro addresses her depression. Because her compromised immune system makes her wary of getting surgery for a likely rotator cuff tear, she takes Motrin 800 or Tylenol with codeine for shoulder pain. Add the estrogen and progesterone she's taking to blunt the symptoms of menopause, and that's around 10 different medications a day, plus more if she gets sick.
If Brooke had to buy those drugs at the local pharmacy, she'd be shelling out at least $1,300 monthly -- more than twice the $579 she gets in Supplemental Security Income. Lucky for her, Pennsylvania has long had one of the nation's most comprehensive programs for insuring the poor. Because she's considered disabled, the state's Medical Assistance program pays for all of her prescriptions.
Now, though, the state says it can no longer afford to cover all of the drugs prescribed to Brooke, or to many other poor people with chronic diseases. Gov. Ed Rendell's proposed 2005-06 budget would apply caps and co-pays to drug coverage. That's got a lot of people worried, and among the most frightened are those with HIV, which has a devilish proclivity for making people both sick and poor.
Buzz Pusateri sits at a table in a Shadyside church, awaiting a communal meal with other members of the Shepherd Wellness Community. The nonprofit organization provides dinners, movie nights, art therapy, t'ai chi classes and much more for HIV-positive people, in an effort to keep spirits high and health intact. Pusateri, 66 and of Friendship, is the prototype for longevity. He was diagnosed in 1982. Back then, he says, "You'd see a person one week, and then two weeks later, you'd hear, 'Oh, he died.'"
There's still no cure for the virus, but since the mid-1980s companies have developed drugs that dramatically reduce the virus' virulence. "You can live a long time with HIV," Pusateri says. "It all depends on your attitude."
Because of the improved life expectancy for AIDS patients, the number of people living with the condition has increased, even as the rate of new infections has declined. In the 11-county southwestern Pennsylvania region, there are about 120 new AIDS cases reported each year, including about 100 a year in Allegheny County, according to the Southwestern Pennsylvania AIDS Planning Coalition (SPAPC). That's down from a region-wide average of around 150 a year prior to 1998. But because fewer are dying, the number of people in the region living with AIDS has climbed from 967 in 1998 to 1,322 in 2003, according to SPAPC. (There are no regional figures on people who have HIV, but haven't yet progressed to AIDS.)
The price of living with HIV is high. On average, an HIV patient's anti-viral drugs cost $10,000 to $12,000 a year, according to the California-based Kaiser Family Foundation, which has made AIDS a focus of its work. Many HIV patients also need drugs to fight infections and counter side effects that can include high blood pressure, high cholesterol, diabetes and nerve damage. That drives the average patient's medical bill to between $18,000 and $20,000 annually, the foundation finds.
Pusateri pays for his own health insurance, which covers his drugs, but he's a rarity; just 7 percent of this region's AIDS patients report having private health insurance.
The public is almost certainly footing the bulk of the bill for AIDS: According to SPAPC, just over half of all local AIDS patients have some form of publicly funded coverage. Another 41 percent are uninsured or of unknown insurance status, and it's probable that some of their care, too, is covered by tax dollars.
AIDS care is largely on the taxpayers' tab because HIV today is less a gay man's disease, and more a poor person's malady [see chart, page 26]. Intravenous drug useaccounts for about one-quarter of the region's new infections, and often coincides with poverty and multiple health problems. Blacks and women, meanwhile, make up an increasing portion of the caseload because they are more likely to be poor than white males.
Making matters worse, employer-provided health insurance is less and less common, and seems to come with higher premiums, deductibles and co-pays every year, says Toye Starver, client services and prevention supervisor at the Wilkinsburg-based Pittsburgh AIDS Task Force. Government help is generally available only to HIV patients who make less than $30,000 a year, Starver says, so some people intentionally limit their incomes in order to get the benefits they need to afford their drugs. "Sometimes people have to choose between [career] advancement ... and getting your medication," says Starver.
Others find that HIV rips their careers right out from under them.
Patti, a 44-year-old Pittsburgh resident who asked that her last name not be revealed, says her ex-fiancé didn't tell her about his HIV-positive status until he was hospitalized for an injury, and a doctor mentioned it in her presence. The two broke up shortly thereafter. The virus had already depleted her immune system to the point where she was often sick, and she was diagnosed with full-blown AIDS.
Patti gave up her $18,000-a-year job as a phlebotomist, figuring she shouldn't be around needles or taking peoples' blood. After fighting off bouts of pneumonia and becoming accustomed to the side effects of AIDS drugs, she worked as a home health aide for a while. "I did that until I really couldn't walk anymore" due to nerve damage from the AIDS drugs, she says.
Patti says she and her 17-year-old daughter now live on $630 a month in Social Security Disability payments. "I had to give up my car," she says. "I was renting a nice home. I had to give up that. ... The church helps with food." She's on a waiting list for a Section 8 rent voucher. She's pursuing retraining opportunities, hoping to become a chemical technician, but is currently dependent on the state for her 23 pills a day, dental and vision care, and public transportation. She's heard that her benefits may be changing, but hasn't learned the details. "I have a positive attitude," she says, "and I don't want to get depressed."
Sam and Terry have long worked with HIV, but the disease has recently driven them to seek public help with their medical bills. The gay couple, living in Pittsburgh, asked that their real names not be revealed. Terry, 35, left a good-paying gig at a printing business when word got around that he had HIV. His coworkers "were just afraid," he says, and wouldn't work with him. He got a lower-paying job at a Home Depot, where the health plan will cover some of the cost of his four HIV meds. For the rest he'll apply to the state's Special Pharmaceutical Benefits Program, or SPBP, created specifically to cover AIDS drugs for moderate-income people.
Sam, 48, worked 20 years in banking, during almost all of which he had HIV. Last year, he says, "My bad days started to outnumber my good days." Nerve damage made standing painful. "The fatigue is tremendous," he adds. He has applied for Social Security Disability, which would eventually make him eligible for public medical coverage.
As HIV patients like Terry and Sam live longer -- but often poorer -- lives, more and more depend on either state Medical Assistance or SPBP. Unfortunately for them, federal budget cuts threaten to undermine both programs.
Pennsylvania's Medical Assistance program has long covered all of the medical needs for the disabled, and most of the medical needs of the working poor who don't have employer-sponsored coverage. But as fewer and fewer companies offer affordable employee health insurance, the number of Pennsylvanians eligible for Medical Assistance has risen to 1.7 million, according to the Department of Public Welfare. Meanwhile, Medical Assistance's payout for drugs has doubled in five years. Federal aid hasn't kept pace with rising costs, and now President George W. Bush wants to reduce federal support for state medical programs by $45 billion over 10 years.
Even without Bush's proposed cuts, the state's Medical Assistance bill would jump by $1.2 billion if left unchecked, to $9 billion a year, according to the Rendell administration. As part of an effort to halve the jump in costs, Rendell's proposed budget calls for $200 million in savings through benefit changes, including limits and co-pays.
Under the proposal, people on Medical Assistance would face limits on the numbers of hospitalizations, doctor visits and prescriptions the program would cover. Disabled people on Medical Assistance could get coverage for six prescriptions a month, while those who are poor but not disabled would be covered for three drugs. Anything above those limits, they'd have to forego, or pay for themselves.
"HIV in many cases will probably eat up those six prescriptions right off the top," says Bruce Flannery, executive director of the Pennsylvania Coalition of AIDS Service Organizations, based near Philadelphia. He worries about what will happen to those who also have conditions like hepatitis C, which often accompanies AIDS, or those with unrelated illnesses or injuries.
"If we had our druthers, we wouldn't be doing anything like this," says David Feinberg, the state's deputy secretary for Medical Assistance. But with federal aid to states declining, he advises patients and doctors to "really work hard to manage their care with a mind to those limits. ... Maybe you'll forego your erectile-dysfunction drug to get a more life-sustaining drug." If the limits create the risk of death, serious deterioration or institutionalization for a patient, they'll be able to apply for a special exception, Feinberg says, though the procedure for getting a waiver hasn't been worked out.
Under the proposed budget, disabled people on Medical Assistance would have to make a $3 co-pay per brand-name prescription, and $1 for generics. Those not disabled would face $12 co-pays for brand-name drugs, and $6 co-pays for generics. There would be no exceptions to the co-pays, Feinberg says.
Even modest co-pays might be tough on Dana Davis' clients. "A dollar is unreasonable!" says Davis, a social worker at West Penn Allegheny Health System's Positive Health Clinic, where about 60 percent of the clinic's 250-odd patients are below the federal poverty line. The North Side clinic's social workers already struggle to keep some patients on their meds, she says, and adding co-pays would just make it that much harder to keep people on schedule, and infections under control.
"To people without means ... a co-pay could be the difference between buying a medication and not buying it," agrees Flannery. Skipping a month can give the virus a chance to strengthen, and can lead to the development of drug-resistant strains, he says.
Drug resistance is a growing problem in AIDS care, highlighted by the discovery of a fast-progressing, almost-drug-proof strain of AIDS in a New York man in December. A patient's failure to consistently take one medicine can sometimes foster resistance, and force them to take another, more expensive drug like Fuzeon, which runs $20,000 a year -- twice the cost of standard treatments.
Non-compliance and drug resistance can be an especially big problem among AIDS patients with drug or mental illness problems.
Vendell Nasir, a 55-year-old South Hills resident, suffers from AIDS and schizoaffective disorder, a mental illness that involves delusions and mood swings. Nasir says he probably got the virus from having unprotected sex with female prostitutes around 1990. When a blood bank told him he had HIV in 1991, he says, "I went off the deep end. I just got high as much as I could." He took to panhandling and living on the street. "After three years, I was still alive, and said, 'Well, maybe I'll be around for a while.'" Nasir eventually moved into a shelter and began straightening out his life, and treating his disease. He says he's been free of illegal drugs for four years, attends therapy and conscientiously takes his meds.
With AIDS and a psychiatric diagnosis, Nasir is on nine medications. He's not sure what he'll do if the limits and co-pays go through, forcing him to eliminate three medications and come up with about $18 a month in co-pays. He gets by on $579 a month in Supplemental Security Income, plus very modest earnings from selling newspapers on a street corner. He gets some free food and a bus pass through the Pittsburgh AIDS Task Force. Still, he says, "I'm always behind by one bill." Sometimes that's just the cable bill, which might seem a luxury, but which Nasir sees as therapy. "The only time I feel really good," he says, "is when I'm lying in bed watching TV."
Nationally, about 400,000 Americans now live with AIDS, and an estimated 600,000 more have HIV that hasn't yet developed into AIDS, according to the Centers for Disease Control. In addition to killing its hosts if left untreated, it tends to provide safe harbor to even more contagious diseases like tuberculosis. In 1990, shortly after the death of Ryan White, an Indiana boy who got AIDS through a blood transfusion, Congress resolved to contain the disease. Signed by President George H.W. Bush, the Ryan White CARE Act steers federal funding to the care, housing, support and transportation of HIV-infected people. More than half of the funding goes to state programs, like Pennsylvania's Special Pharmaceutical Benefits Program (SPBP), which provide prescription drugs for HIV patients who don't qualify for programs like Medical Assistance.
As the number of people living with HIV climbed, Ryan White funding rose from $220 million in 1991 to $1.8 billion in 2001. Since then, growth has slowed. From 2001 to 2003, federal Ryan White funding rose just 11 percent, to $2 billion, even as the number of people receiving HIV drug assistance through the program increased by 12 percent, and drug prices climbed. According to the National Alliance of State and Territorial AIDS Directors, many states have reduced the number of drugs covered, put ceilings on the amount of reimbursement per patient, or put people on waiting lists.
By June 2004, the waiting lists grew to 1,629 people nationwide, and several people reportedly died while waiting because they couldn't afford their meds. George W. Bush announced a one-time, $20 million federal infusion. Then, in his Feb. 2 State of the Union address, Bush gave AIDS programs reason for optimism. "Because HIV/AIDS brings suffering and fear into so many lives, I ask you to reauthorize the Ryan White Act to encourage prevention, and provide care and treatment to the victims of that disease," he told Congress.
Four days later, Bush issued a proposed budget that increased Ryan White funding by a minuscule $10 million, to almost $2.1 billion. Because he isn't asking to renew last year's $20 million emergency infusion, the proposal actually amounts to a $10 million cut in federal assistance for HIV programs.
Advocates for AIDS patients nationwide have criticized Bush's proposal. "Flat funding at a time when patients are increasing is actually a cut," says Flannery.
Pennsylvania's SPBP has been one of the nation's best programs. It's available to individuals with HIV making less than $30,000 a year, or those with families who make slightly more, and provides full coverage for about 700 drugs for the virus and its many complications. Even if they have private insurance, people making less than the income limit can get Ryan White funding to cover their co-pays and deductibles.
SPBP, which serves 5,200 people, can afford to be more comprehensive than most other states' programs because Pennsylvania has traditionally added $1 for every $2 that the federal government has provided. SPBP's budget is expected to increase, from $34.8 million in the current year to $40.1 million next year. But like Medical Assistance, it faces a fiscal squeeze play. Increases in the number and cost of drugs covered have "driven the costs up more than we anticipated," says SPBP Administrator John Folby. If Bush holds funding down, and costs continue to rise, says Folby, the program's advisory group would consider removing some drugs from the formulary -- or worse. "Do you want us to say to newly diagnosed people, 'Too bad, you're on a waiting list'?" Folby asks.
Brooke would rather not show off her apartment today. She's turned the place upside-down in an effort to hide the cracks in the walls, so the inspector being sent by the department of Housing and Urban Development won't order her to move. For now, she's sitting sipping coffee in the hallway of her four-unit apartment house. She's excited about her plans for the evening: She's going to see the musical Forever Plaid, along with other members of the Shepherd Wellness Community, which rounded up free tickets. The Shepherd Wellness outings are a wonderful break from what she calls "the drip, drip, drip of being poor," she says. She always does up her hair and wears one of her nice outfits. "You feel like a rich person," she says.
Right now, though, Brooke is weighing which drugs she'll cut from her regimen if the budget proposal passes. The two AIDS drugs, at least one stomach drug, the diarrhea med and the pill that stops the shaking are must-haves. That leaves one more. Should it be the anti-depressant, or one of the pain meds she takes for her shoulder? "I don't know," she sighs. "I might have to go back to sleeping all day and being sick and depressed all the time." Then a thought strikes her. "What if I get sick?" she exclaims. "We need antibiotics because we don't fight infections well."
All AIDS drugs are brand name, as are her other prescriptions. So even with just six drugs, she'd face $18 in co-pays per month. The former bookkeeper reviews her budget. She gets $579 per month. She pays $150 in rent (the government pays the rest) and around $130 in utilities. In addition to her $43 in food stamps, she spends about $150 on food. There's $75 for insurance, gas and maintenance for her used car, which she calls "the one hold-out to keep me independent." Oh, and the $25 she spends on what she calls "my one treat" -- having her hair done. That leaves about $6, just one-third of what she'd need to cover the co-pays.
Sometimes she sets aside her $6 extra to help pay the biennial $45 renewal fee for the nursing license she's never used. She could let the license lapse, she supposes, but she'd rather not lose the ceremonial R.N. after her name. "I lost all of the things by which people identify themselves," she says: her son, her health, her career and any real hope of intimacy. The nursing license is all that's left, and she wants to keep it. "I think it's some little, small way of saying the rapist didn't win."