In the 25 years since health officials diagnosed a global pandemic, Seacoast caregivers have shifted the course of treatment

Anne Spinney smokes, drinks a lot of coffee and has four cats, including a Siamese. Her voice is tired and strained; it’s a smoker’s voice. She has been living with AIDS for 18 years. She was first diagnosed with HIV in 1986, and with AIDS in ’88. She discovered she was infected while pregnant with twins; after five months, her doctor warned her that she was not healthy enough to survive the remainder of the pregnancy or childbirth, and the pregnancy was terminated. She had an ex-boyfriend who died of AIDS in ’85, but Spinney, who is also a recovering alcoholic and drug addict, doesn’t know if she was infected by her ex-boyfriend or through needle sharing. Nor does she particularly wonder at this point; the disease is a reality she lives with every day, regardless of how she contracted it.

Spinney brings a plastic tray filled with eight different prescription bottles into the kitchen of her Rollinsford home. Mixed together, these drugs are known as highly active antiretroviral therapy (HAART): the much celebrated AIDS “cocktail.” At its most effective, the cocktail can slow the virus’s replication; decrease the number of HIV viruses in the body; restore white blood cell count to a healthy level, boosting the immune system; and drastically lengthen an AIDS patient’s expected lifespan.

When HIV/AIDS first emerged 25 years ago, before it had been identified and before any sort of medication had been developed, people infected with AIDS weren’t expected to live more than 10 months. Over the years, it was perceived in many different lights: the scourge of homosexuals and drug addicts; a terrifying mystery; an unbelievable tragedy; a manageable disease; the worst pandemic of the modern age. With the introduction of HAART, AIDS in America shifted from a fatal illness, ensuring a swift and certain death, to a chronic illness. It is, in an ideal scenario, a manageable, though deadly, disease.

There are problems with the medications. The cocktail has a lengthy list of side effects, from abdominal pain to liver failure. An estimated 30 percent of AIDS patients can’t take the antiretroviral drugs because the side effects are too prohibitive. When the drugs do work, their effectiveness depends on the patient’s ability to adhere to a strict regimen. Spinney used to take her medications twice a day: once in the morning and once at night. The virus became resistant to the meds, though, and her doctors have just recently put her on a new regimen, which she must take three times a day.

“You can get into a routine, but you don’t know how long the meds will work,” she says.

The antiretroviral drugs were first approved by the FDA in 1995 and were soon put into use so effectively that some misguidedly thought AIDS was finished. For the majority of Americans, AIDS receded into the background, becoming, once again, something most were vaguely aware of but not necessarily concerned with.

“Some people might think there’s a cure,” Spinney says, talking about the cocktail. “There isn’t, though, and I don’t think there ever will be one. We can’t cure the common cold.”

Spinney doesn’t work; her doctors won’t let her, as unnecessary physical strain will further weaken her immune system. Besides, she would need, as she notes, “a very understanding boss.” She spends much of her time volunteering with Aids Response Seacoast, speaking at schools, rehab centers and women’s shelters. “To anyone who will listen,” as she puts it. She does it out of a sense of moral obligation.

“When I was active (sexually and using intravenous drugs), people knew (about the disease), but they didn’t talk about it,” she says. “Silence has caused a lot of infections and a lot of deaths, and I won’t be a part of that. We know how to stop this.”

There are 1,000,000 people currently known to be infected with HIV in the United States—1,017 in New Hampshire and 259 in Strafford and Rockingham counties. Of those infected in New Hampshire, 76 percent are men and 24 percent are women. Forty-nine percent are between the ages of 30 and 39; 21 percent are between 20 and 29.

Approximately one-third of HIV-positive people nationally don’t know they’re infected, because they don’t return to check their test results, according to the federal Centers for Disease Control.

CDC data also points to a shift in demographics. The largest emerging group of people diagnosed with AIDS is women ages 25 to 44. In 2004, 27 percent of all AIDS cases in the United States occurred in women, compared with only 7 percent in 1985, according to the CDC. The overwhelming percentage (70 percent) are infected by heterosexual intercourse.

“The HIV/AIDS epidemic in the United States is increasingly likely to have a woman’s face,” concludes a February 2006 report titled “Women and HIV/AIDS in the United States” from the Henry J. Kaiser Family Foundation.

People still hold misconceptions about HIV and AIDS. “We get a lot of questions about HIV being spread through kissing or mosquitoes,” says Robert Childs, a prevention educator for Aids Response Seacoast, of the prevention education presentations he organizes at high schools. “A lot of people we talk to still think that HIV and AIDS don’t affect heterosexuals, even though heterosexuals are going to surpass every other group in the U.S. in terms of exposure.”

ARS evolved as a grassroots non-profit, community based service organization in 1987 to offer education and support for people in Rockingham, Strafford and southern York counties affected by HIV/AIDS. The group organizes educational sessions targeting segments of the population most at risk of contracting HIV, including intravenous drug users and young people.

“Some high schools can be resistant to our coming in and doing a presentation,” says Childs. “Most high school health programs focus on abstinence when it comes to preventing the spread of STD’s. We know from surveys that high school students are engaging in sexual activities and being exposed to HIV and other diseases. We offer a combination educational package, instead of abstinence only.”

After the confusion and ignorance of the 1980s, the early 1990s would seem to have been the heyday of AIDS awareness. The death toll was rising, researchers were learning more about the virus and it became clear that AIDS affected more than just homosexual men. With Magic Johnson discussing his own HIV infection, Tom Hanks winning an Oscar for “Philadelphia,” and MTV’s casting Pedro Zamora, an HIV patient and educator, on the Real World, AIDS merged with mainstream culture. Then the cocktail was introduced, and people’s attitudes seemed to changed again, quickly and rather drastically.

“We have a penchant in this country for thinking things are over before they are, and then we have to go back and start over,” observed Richard Cotter, an AIDS patient and treasurer of ARS at an ARS press conference on June 16.

There remains no cure for AIDS, and people continue to be infected: 40,000 test positive for HIV each year in the U.S. While the cocktail has drastically decreased the number of HIV cases that evolve into AIDS, the total number of AIDS patients continues to rise as the newly diagnosed join those who have been living with the disease for a decade or more.

The United Nations estimates that HIV has infected more than 65 million people worldwide, 25 million of whom have died. At a U.N. meeting for a five-year review of global efforts against AIDS, which took place from May 29 to June 2, 2006,  General Assembly President Jan Eliasson noted during his closing speech that at least 20,000 people lost their lives to AIDS and more than 30,000 contracted HIV during the five days they met to discuss the issue.

ARS currently works with 102 clients on the Seacoast. In addition to their education and prevention efforts, the group helps its clients find funding to cover the cost of their medications, provides transportation to doctor’s appointments and directs them to counseling services and support groups. ARS has been known to help clients make rent payments and help cover heating and utility costs, and they also manage a food pantry.

“Funding and getting the services they need is important,” says Mahoney. “But our clients have a variety of needs. Many of them are low-income, and can have a tough time just trying to live on the Seacoast.”

ARS works with an annual budget of $750,000, two-thirds of which comes from the federal government, according to Anne Rugg, executive director. The rest comes from local sources, like the Dover and Portsmouth Community Development programs, the United Way and private donations. ARS receives no money from the state budget.

Most federal money for AIDS-related efforts comes from the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, named after a teenage hemophiliac from Indiana. White was kicked out of high school after he was diagnosed with AIDS, fought for public awareness of those who suffered with AIDS, and died of the disease in 1990 at the age of 18. Over $2 billion will be spent under the CARE act in 2006.

According to Denise Rondeau, the STD/HIV section administrator for the New Hampshire Department of Health and Human Services, ARS received $193,702 under the CARE Act; the state received $1.2 million under the CARE Act, which it uses to fund the AIDS Drug Assistance Program (ADAP), which provides patients with a means of covering medication costs.

In order to cover the cost of medication, many AIDS patients turn to federal funding. Some patients qualify for Medicare; those who don’t, either because they are not old enough or do not meet the disability provisions, turn to ADAP. To qualify for ADAP, a patient must have documentation of a positive HIV test, they must meet certain medical criteria (specifically, their CD4 count, an indicator of overall immune system functioning, must be below a healthy level), they must have a referral from their physician, or they must have been exposed in the womb.

“We don’t arbitrarily come up with these guidelines,” says Rondeau. The qualifications are decided upon by the U.S. Health Resources and Services Administration

Rondeau notes that last year was the first time the state of New Hampshire allocated any money for AIDS-related efforts: $180,000. According to Rondeau, the funding came as a result of a state legislature study of HIV care delivery in New Hampshire. The study concluded that additional funding would benefit the availability of care for HIV/AIDS patients in the state, especially with the possibility of federal changes in AIDS-related spending.

The money was included in the fiscal year budget for July 2005 to June 2006. When the CARE Act was up for reauthorization in September 2005, there were concerns among state health officials and representatives that New Hampshire might lose some of its federal funding. Rondeau says that has not happened, and New Hampshire continues to receive money from the federal government. The state-allocated money goes entirely to funding ADAP.

As AIDS medications become more common in the United States, the virus evolves and grows resistant to treatment. An increasing percentage of people newly infected with HIV have a strain of the virus that is resistant to different types and levels of medication. Education and prevention remain the best—perhaps the only—means of reducing the spread of the disease.

“HIV can be prevented,” emphasizes Anne Rugg, echoing the sentiment of many involved with HIV/AIDS awareness education. “The prevention message remains the same: use a condom for all sexual acts. Never share a needle, for any purpose.”

All she can do is keep talking, not get frustrated, and hope more people will listen.

Edie McCaddin-Bower, associate director of patient care services for Seacoast Hospice, couldn’t say how many AIDS patients the service has worked with. This is because, as the disease affects the immune system, AIDS is not usually listed as the cause of death.

“It’s like saying someone died of old age,” she says.

She has worked with many AIDS patients in her 12 years with the hospice service.

“We often knew they had AIDS, but not because they told us,” McCaddin-Bower says. “Often they kept it from their own families.”

Typically, people won’t turn to hospice services until death is a near certainty: a terminal illness with a prognosis of six months or less. Seacoast Hospice, a private, nonprofit group, then supports them with medical services, social workers, bereavement support and homemakers. They also provide medications to ensure their patients are as comfortable as possible. These services come at no cost to the patient and are covered by federal funding through Medicare and private donations.

For AIDS patients on the Seacoast, however, hospice services have become increasingly unnecessary. In fact, McCaddin-Bower can’t remember the last time Seacoast Hospice had a patient with AIDS.

“When I started working (for Seacoast Hospice), the average prognosis for someone with AIDS was something like 10 months,” she says. “Now you have people living with AIDS for 25 years or longer.”

McCaddin-Bower attributes this shift entirely to the AIDS medications introduced in the mid-1990s.

“There was almost a drop-off,” she says. “We started seeing fewer patients with AIDS.”

According to the CDC, the number of AIDS-related deaths in the period from 1996 to 2000, after the introduction of HAART, was 59,807; between 1993 and 1995, 159,048 people died from AIDS.

C. Andrew Martin watched his partner die of the disease in 1996. During his last months, the couple turned to Seacoast Hospice for help.

“It was the most professional, loving, supporting, caring experience, regardless of diagnosis,” says Martin. “That’s exactly what motivated me to change careers, go to nursing school and become a hospice nurse.”

Martin has worked for Seacoast Hospice now for five years. He agrees with McCaddin-Bower that there has been a marked decrease in the number of patients with AIDS cared for by Seacoast Hospice.

“Ten years ago, there would be at least two or three a year,” he says. He also attributes this shift to the new AIDS medications, but wonders what will happen as the virus continues to evolve. “It will be interesting to see if the cocktails lose their effectiveness.” He wonders if Seacoast Hospice might not see a new wave of AIDS patients in the coming years.

One can only hope that newer medications are developed that can keep pace with the virus’s evolution, and that people will listen to the messages of all those promoting prevention and safety.

“Years ago, kids wouldn’t come in to talk with me,” Anne Spinney says of her visits to area high schools. “Now they’ll come. Sometimes there are a lot of pauses and quiet moments, but then they start asking questions.”

Spinney says that, often times, she gets sick during the year when she has two or three presentations to do in a week. She says her husband of five years (who is not infected) would like her to stop, but she tells him she can’t.
“I’m doing this because no one did it for me.”

Twilight Auction to benefit ARS

AIDS Response Seacoast will hold its annual Twilight Auction on Saturday, Aug. 24, at Stonewall Kitchen in York. Over 300 people attended last year’s auction. The event begins at 4 p.m. with a silent auction and live auction preview. Over 300 items have been donated, including vacations to Martha’s Vineyard; gift certificates; antiques; and more than 30 pieces of art by Norman West, Michael Palmer, Katherine Doyle, Heather Sargent and Jane O’Connell.  For more information, call 603-433-5377 or visit www.aidsresponse.org.