Mic Pitkin has HIV. That's about all he knows. He has no clue what his viral load looks like. He's supposed to have his blood drawn every three months to check his T-cell counts. But he's missed his last two blood draws. He questions the strength of his immune system.
"I could be in AIDS right now and not know it," he says.
Pitkin sips a mocha as he talks about the state of his health at one of his favorite downtown coffee shops. Dozens of doctors' offices and labs are just blocks away. But something he refers to as his "brick wall" prevents him from accessing the medical care that's practically within his view.
He cannot just walk into a doctor's office and request a host of lab tests that would tell him how far his disease has progressed. Doctors who specialize in the treatment of HIV are far and few between in Boise. Plus, he has no health insurance.
Pitkin looks healthy. His face glows, and the lines that you'd expect to see when he smiles never appear. He looks more like a 30-something rather than a 41-year-old man who files away letters from governors and mayors and AIDS advocates, all writing in response to his vented frustrations. Just by looking at Pitkin, you'd never guess that he spends countless hours every week fighting the health care system. It wears him down, perhaps even more than the disease itself does. And he's tired of fighting.
"I made the decision that I can't be playing with my health," Pitkin says. "I'm just going to drop all this and move to Los Angeles"
In Los Angeles, Pitkin said, he can find what has been eluding him since he left there to return to his boyhood home in Boise. In Los Angeles, he'll find a host of clinics, doctors, support groups and social services listed and organized in a directory that rivals the thickness of the Emmett telephone book.
"Ever since I got here, I knew there were no services here," Pitkin says. "Why are all the eggs in one basket? Why isn't there a specialized community at each medical center?"
Boise has one: the HIV Service Clinic at 777 N. Raymond St., formed in 1998 with funding from the federal Ryan White Care Act. The clinic, operated by Family Medicine Residency of Idaho, receives very little local funding and shoulders the responsibility of caring for HIV patients from as far away as Pocatello. It's staffed by doctors lauded for their personal sacrifices, and who take huge pay cuts to care for the medically marginalized.
"I feel confident in the future of my medical care (in Los Angeles)," Pitkin says. "But what if this happens to someone else?"
"Let's face it, Idaho is not the best place to have HIV," says Travis Leach, manager for the HIV Service Clinic in Boise. Funds are scarce. Lawmakers have been historically reluctant to put money into the system. Patients find it difficult to get themselves on Medicaid. And advocates say our leaders don't even want to admit that HIV and AIDS exist in Idaho. Pitkin recently wrote to Boise Mayor Dave Bieter and Governor Jim Risch to voice concern about the limited medical and social support resources available to HIV and AIDS patients in Idaho.
Risch responded in a letter to Pitkin, writing that "the demand for the array of services and the justification for the investment is not the same as it is in California." Risch wrote that because of the low prevalence of HIV cases in the state, "It is not necessary for Idaho to invest in creating the type of infrastructure that is found in larger metropolitan areas with a high incidence of HIV."
But for the roughly 1,300 Idahoans living with the disease, HIV and the need for adequate HIV and AIDS resources are very real. Also, under new federal guidelines, that number itself might grow.
According to a recent Idaho Department of Health and Welfare study, about 80 percent of Idahoans living with HIV and AIDS do not receive medical treatment for their disease.
"Some of them are just not ready to see a medical provider," says Jared Bartschi, a program specialist with the Idaho Department of Health and Welfare Idaho STD/AIDS Program. He also warns that that 80 percent figure comes with the same caveats that accompany any statistical analysis--some people may have been left out of the survey and incorrect estimates are always possible, he says. "This was our first stab at getting this information," says Bartschi.
The reasons that people don't seek treatment vary, says Jamie Perry, a case worker for the HIV Services Clinic in Boise. Denial and stigma keep some from getting the health care they need, she says. Perceived good health also keeps some out of the doctor's office.
"If you feel good, it's not your prerogative to get into care," Perry says.
Accessibility of health care is another issue. The further a patient lives from the HIV Services Clinic near Curtis and Emerald streets in Boise, the more difficult it is for them to access the resources and services provided by the clinic. Those services also become a lot more expensive. A doctor who treated HIV patients in Twin Falls recently left his post, leaving 45 patients without an HIV specialist.
"It's a real hardship," for people to go without an HIV specialist, Leach says. "They would have to go to their primary care physician and hope that they get someone with some experience (treating HIV)."
An HIV Services Clinic doctor now picks up some of the slack in Eastern Idaho. The doctor often leaves Boise at 4 a.m. to commute to Twin Falls before returning after 8 p.m. in the evening. Other Twin Falls-area HIV patients sometimes come to Boise for treatment. The transportation costs are often billed to the HIV Services Clinic at about $150 per trip. Language barriers keep some non-English speakers from seeking treatment and undocumented immigrants often fear that medical workers could report them to immigration authorities.
Even close proximity to the Boise HIV clinic did not guarantee unhindered access to health care resources for Pitkin. He was formally discharged from the care of the HIV Services Clinic in October, following a series of complaints he made against the center. Pitkin says that he refused to sign a document that he felt was an admission that he was at high risk of infecting others with HIV. And he says he had difficulty accessing a Viagra prescription to address the sexual dysfunction that sometimes accompanies HIV and was eventually told by a clinic staffer that "we don't want you to be like one of those HIV-positive people who runs around infecting others."
"I can't believe they would say that," Leach says. He said that if someone asks for an erectile dysfunction medication, they have to go through safe-sex education. That message might have been misinterpreted by Pitkin, Leach said.
Nevertheless, a letter informing Pitkin of his discharge noted that, "It is clear that from the nature of our conversation, along with a review of the history of your previous interactions with our clinic staff, that it will be virtually impossible for you to form a therapeutic patient-physician relationship at our offices."
Pitkin says he doesn't have an issue with the clinic and acknowledges that not all patient-physician relationships work out. But when other patient-physician relationships fail, the patient can move on and find another provider. But for the HIV positive in Idaho, health care choices simply do not exist. If one clinic discharges you, there isn't another clinic to go to.
"They're telling me to go to another doctor in Boise. But, I'm sorry, there are not other trained HIV specialists," Pitkin says. "It's like a dentist telling you to go see a veterinarian."
Leach says the clinic does not discharge a patient without giving the situation a lot of thought.
"We know that there are not a lot of resources, so we go to great lengths to keep them here. Leach says. "We fear ... if we didn't serve them, there would be nothing."
There's something old-fashioned about the modern care patients receive at the HIV Services Clinic. Back in the old days, some patients paid doctors with apples. HIV Specialist and HIV Services Clinic medical director Sky Blue has accepted payments in the form of turkeys, himself. He ended up redistributing them to other needy patients.
"He would do this if he didn't make a dime," Leach says. "He doesn't make much money."
Long hours and little pay: That's the life of the HIV specialist. The scenario isn't what HIV Services Clinic physician Clay Roscoe planned for when he embarked on his second career as a physician. He planned to work to live and work to play--get the patients in, see them for 15 minutes, get them out and bill an insurance company. That plan changed after he took an elective course at Pennsylvania State University called "Care of the HIV Positive Patient." That class put him in an HIV clinic that included an in-house pharmacy. He also worked with patients unlike any he'd met as a medical student: Educated, passionate and energized about taking control of their health. They also formed coalitions to get the government to take notice of them.
That experience changed the course of Roscoe's medical career.
"This is a very interesting patient population," Roscoe said. "Everyone has a story."
Roscoe traded the possibility of specializing in emergency medicine to become one of the few Boise-area doctors completing his certification as an HIV specialist. The pay is hardly lucrative and he doesn't see any simple cases. A 30- to 40-minute visit with a patient is the norm at the Boise HIV clinic.
"They could spend a lot of time here," Roscoe says. "I'm always late, running behind."
And the care is intimate. HIV doctors learn about their patients' personal lives, who they're seeing and how the disease affects their social relationships. Because HIV and AIDS don't limit their attacks to one part of the body or one system, doctors look beyond what appears on a lab test and at the entire body. Oral health issues, anemia and cervical cancer are of particular concern. So are additional infections such as Hepatitis C. Some people with AIDS had substance-abuse problems before becoming infected. And an HIV diagnosis can contribute to mental illnesses like depression. Patients with HIV and AIDS often have lipid problems and a host of other ills associated with the side effects of the medications they take. And Roscoe doesn't just worry about his patients' health as it pertains to HIV. The drugs designed to halt the progression of the disease work so well now that HIV has become another manageable, chronic disease, Roscoe says.
"The medications are so good now that they can die of other things," he says.
That means HIV patients are now living long, healthy--and expensive--lives with the disease.
"We would love to have 10 ALPHAs (Allies Linked for the Prevention of HIV/AIDS) and three clinics, if we could just get the funding. But we have people who can't even afford their medication," Leach says.
ALPHA is an alliance of local, regional and national organizations, formed in 2003 to treat people with HIV/AIDS and offer education. The group offers free HIV testing and counseling.
Funds to treat the disease are not exactly plentiful and the Boise HIV Services Clinic didn't even exist before 1998. Changes in the prevention and treatment of the disease could stretch the already scarce funds even further.
In September, the Centers for Disease Control and Prevention issued new guidelines for the testing of HIV. The recommendations advise routine HIV screening of adults, adolescents and pregnant women. The advisory replaces 1993 guidelines that recommended that people who are considered at high risk of contracting HIV be tested.
"That's a big deal that the CDC is now (advising) that every American should know their status," says Dr. Christine Hahn, state epidemiologist. "Once people know they are HIV positive, most people will change their behaviors and they do not spread the disease."
Hahn said that in recent years, the number of people newly diagnosed with HIV has stabilized but more people could join the HIV-positive population under the new guidelines. That would add to the estimated 1,300 Idahoans living with the disease--a population that's growing because people are living longer with the illness. About 25 percent of people with the disease do not know that they are infected, according to the CDC.
"More and more people could be tested and the numbers may go up or they could stay the same," Hahn says.
Physicians estimate that the new guidelines could identify an additional 200 people who do not currently know that they are HIV positive.
So is Idaho prepared to treat the estimated 80 percent of HIV infected individuals who do not currently receive care? Can we afford to treat the estimated 200 newly diagnosed people who could come out of the woodwork as a result of the CDC's new HIV screening recommendations?
"Not even close," Leach says. "You're going to have a lot of people who know their status but don't have access to quality providers ... We're not getting resources at the same rate that we're seeing patients."
State funding accounts for just a drop in the HIV and AIDS budget bucket. Instead the federal government pays for most of Idaho's costs associated with the prevention and care of the disease.
Federal dollars, mostly from Ryan White Care Act appropriations, cover the bulk of the total $2.25 million HIV/AIDS budget for Idaho. The state contributes $814,700 to that fund.
But HIV/AIDS activists and caregivers consider the state's contribution an anomaly from the 2006 Legislature, not something they can count on in the future. Most years, the state appropriates just a fraction of that to the care of HIV and AIDS patients. HIV Services Clinic grant writers are curious about how Idaho state funding of HIV and AIDS care compares with other states and is currently conducting an investigation of those numbers.
Last year, the state appropriated just $177,000 for the health care of HIV and AIDS patients. Most of that money paid for the cost of medication through the AIDS Drug Assistance Program that provides HIV and AIDS antiretroviral and other medications for people living with the disease.
"From a public health perspective, it's very important for people to get their medications because it reduces their viral loads, which reduces their chances of infecting others," says Tom Shanahan, spokesperson with the Idaho Department of Health and Welfare.
But to qualify for the drug assistance program, patients must make less than 200 percent of the poverty level. For a single person, that's less than $19,600 per year. Those making more than 200 percent of the poverty level could find themselves in one of the many healthcare gaps that providers say make it difficult for some HIV/AIDS patients to receive the care that they need.
About 106 people are currently enrolled in Idaho's AIDS Drug Assistance Program. Until last April, there was a waiting list to get in the program. That prompted the 2006 Legislature to grant a one-time $602,000 addition to the budget, bringing the Idaho contribution to the HIV/ AIDS management and care budget to $814,700. The boost allocated $780,000 for medication assistance and helped clear the AIDS Drug Assistance Program (ADAP) waiting list.
But Shanahan said the waiting list won't stay empty for long. The names of low-income HIV and AIDS patients could once again fill the waiting list within three to four months. The reason: The cost of one of the most popularly prescribed HIV drugs just increased by 30 percent.
"Your dollar doesn't go as far," Shanahan said.
People living with HIV and AIDS are not denied health care because of their inability to pay, say Health and Welfare officials and staffers with the HIV Services Clinic.
"No one who contacted us went without (medication). Everyone was served," says Shanahan.
Even those on the AIDS Drug Assistance Program waiting lists didn't have to wait for additional funding before they got the medications they needed--which can sometimes total as many as 82 pills per day. The HIV Services Clinic operates on a sliding scale, enabling patients to pay what they can. Resourceful advocates fill in other gaps. Volunteers with ALPHA help cash-strapped patients find food, clothes and furniture. Social workers help fill in other gaps. But patients still fall through cracks.
"HIV is all over the board as far as who it affects, and so are the needs," says Jamie Perry, case manager with the HIV Services Clinic. The needs of an HIV and AIDS patient go beyond check-ups and medication. HIV patients are sometimes isolated in their disease; depression often accompanies the infection, and so does financial stress. Case managers at the clinic try to treat what can't be treated with a pill. As Duane Quintana, director of ALPHA puts it, the three case workers at the clinic find ways to get patients' rents paid, their medication covered and food in their cupboards. They'll even get dog food to a patient's pet if they need to.
"There are things that we can't do," Perry said. "That's why ALPHA is such a great agency."
ALPHA has amassed a volunteer base of 600 since its inception three years ago. Volunteers help fill in the gaps patients find themselves in when they are too healthy to go on disability but too sick to take care of their daily needs. They help pull patients out of the cracks when they make too much money to qualify for public assistance but are too poor to pay for their health care needs. And they try to help those who find themselves in one of the biggest gaps: The insured and underinsured.
"Sometimes they're the ones who are in the worst position because they don't qualify for prescription assistance," Perry says. "But they don't want to lose their insurance."
ALPHA makes prevention a priority, but they also provide help for people living with the disease through peer support and donations of goods and services.
"What's hard is what's beyond our control, and that's how people respond to people with HIV," says Jessica Anslinger, a caseworker with the HIV Services Clinic. "There's no Band-Aid for rejection."
Quintana used his own HIV diagnosis as a catalyst to launch ALPHA and spread a message of prevention.
"The biggest barrier is not having compassionate communities," he says. "It's easy to get your medication. But it's not easy being okay with having HIV."
Quintana says that since being diagnosed with the disease almost seven years ago, he still has not been able to shake the stigma associated with HIV. That prevents people from talking openly and honestly about the disease, getting tested, and seeking medical attention and education. That fear prevented many HIV-positive people interviewed for this story from giving their names.
"People with HIV are people no matter how they got it," Quintana says. "They're a person, not a disease. They're not an IV drug user or promiscuous. They're a person with HIV. The first thing people ask is, 'How did you get it?' And it's irrelevant. And if they didn't ask it, they think it. I think the change is slow. But I've seen a huge surge of (support) because there's a huge number who are pulling themselves out of their isolation and talking."