Erin Gingrich is the quintessential All-American Girl. The 37-year-old grew up in a well-to-do Yuma family as a gifted classical pianist and says she “had hopes and dreams of making my mark in the world.” In 1996, Gingrich was crowned Miss Arizona and competed in the Miss America Pageant. Her year of service as Miss Arizona was filled with speaking engagements for Governor Fife Symington’s Coalition on Violence Against Women. She stayed in Phoenix after passing along her crown and started attending college.
Then she became a drug user. Though it seemed an unlikely path for a beauty queen, Gingrich says she had deep-seated issues with her self worth. “After my year of service was over, I was just like, ‘You know, I really want to make choices based on self,’ and those choices got me into a 13-year drug addiction,” she says. “At that point, nothing was going to touch me, and possibly at that point, I don’t know if I even cared anymore. I found this deep, dark hole that I couldn’t get out of.”
She went into rehab on February 21, 2010. She’d been clean 21 days when she learned she was HIV-positive. “And that was a direct result of the choices I made,” Gingrich says. “I’m not saying I wasn’t educated or had goals or anything like that – I just don’t think I’m a risk category. And I didn’t know any better. When I was diagnosed, I’d never met anybody [with HIV]. My fourth grade teacher died from it back in ’85, so that was my knowledge.”
Gingrich is one of nearly 15,000 HIV-positive people in Arizona, which the Centers for Disease Control ranks 21st for cumulative reported cases, making it a “moderate-to-high incidence” state for HIV/AIDS infection. Arizona Department of Health Services (ADHS) estimates roughly 800 Arizonans are diagnosed with the virus every year, and an estimated 2,785 people in metropolitan Phoenix are unaware of their HIV-positive status.
HIV medications – which are crucial to treating the disease and helping prevent its spread – cost between $315 and $4,000 a month. Because of the high cost and awareness issues, almost half the HIV-positive people in Arizona are not receiving needed medical treatment. That number is expected to grow as funding is slashed, prevention programs are eliminated, and minority high-risk groups are not being reached, particularly in Arizona’s rural areas. Since 2006, the number of enrollees in Arizona’s assistance programs for HIV/AIDS patients has grown exponentially (by 80 percent since early 2011 alone), while funding for these programs has diminished rapidly since 2009. Further complicating things is a change Arizona lawmakers made to the Arizona Health Care Cost Containment System (AHCCCS) in 2011, which prevented childless adults from applying for coverage and dropped those who failed to renew, with no re-enrollment option. In the wake of the cuts, health officials and caseworkers are relying on charity from local philanthropists and scrambling to find alternatives for patients to procure their medications and support services.
Never Say Never
Imagine you’re a 36-year-old woman. You’ve never smoked cigarettes, drank heavily or done drugs; in fact, you’re an exercise fanatic who eats a wholesome diet. You don’t even really get colds. Having been at the same employer for nearly 13 years, you apply for independent life insurance. A nurse comes to your apartment and performs a physical. Two weeks later, you get a letter in the mail saying that you – a perfectly healthy person in her mid-30s – have been declined coverage, with no explanation. The insurance company tells you to contact your doctor. Your doctor tells you you’re HIV-positive.
This is exactly what happened five years ago, to a Phoenix resident who asked to be identified only as “Jennifer.”
“I never thought it would happen to me. And that’s what most people think, like ‘Oh, I have sex, but that’s not going to happen to me like the stereotypical drug user or gay guy or whatever,’” Jennifer says. “And I’m a straight, white female, and in my 30s, I got it. So to me, if you have sex without a condom once, you can get it. It’s not choosy.”
While men who have sex with men remain the highest at-risk group for HIV infection, statistics consistently show HIV doesn’t discriminate. “Thirty percent are women and children. Worldwide, it’s closer to 68 percent are women and children impacted by HIV and AIDS,” says Carol Poore, president of the Southwest Center for HIV/AIDS in Phoenix. “We know that one of our youngest ages for testing and having an HIV-positive diagnosis was either 13 or 14. And then the oldest we’ve ever seen was actually in his early 80s. So HIV and AIDS is not a respecter of age or demographic background. If you’re having unprotected sex, you are at risk. That could be anybody at any age.”
Living with HIV isn’t easy, but Jennifer’s proof that if someone gets on antiretroviral medications and into supportive services, they can live a relatively normal life with an average life expectancy, and lessen the risk of transmitting the virus to another person.
To appreciate the importance of taking HIV medications, it helps to understand how HIV works. Imagine your body is a battleground and HIV is an invading warlord. First, HIV faces off against your front line – CD4 cells (aka T cells), responsible for identifying invaders and calling for reinforcement from other cells in the immune system. But instead of immediately killing the CD4 cells, HIV attaches himself to the cells and hijacks them to make copies of himself, which are disseminated throughout your body. Without HIV meds, the warlord and his attendant clones slowly overtake your entire immune system, leaving your body vulnerable to sickness. A normal CD4 range is anywhere from 500-1,000 cells per cubic millimeter of blood. If an HIV-positive person’s CD4 count drops below 200, they are considered to have acquired immunodeficiency syndrome (AIDS).
Enter antiretroviral medications. While they can’t completely vanquish the warlord, they do impede the destruction of CD4 cells by blocking enzymes the virus needs to fully replicate. HIV medications also lower the amount of HIV in a person’s blood (known as their “viral load”), reducing the chances a person will transfer the virus.
“Before we had effective antiretroviral therapy, HIV infection was an almost universally fatal disease,” says Dr. Joel Gallant, professor of medicine at Johns Hopkins University and associate director of Johns Hopkins AIDS Service. “Today, people who take antiretroviral therapy not only can prevent progression to AIDS, but they can probably also live normal or near normal life spans. In addition, treatment of HIV infection – with suppression of the viral load to undetectable levels – is our most effective form of prevention. It virtually eliminates the risk of transmitting HIV to sexual partners.”
Jennifer went on medications in 2010. She says ever since, her viral load has been undetectable. Her recent CD4 count was 1,055. Now 39, she recently completed the P.F. Chang’s Rock ‘N’ Roll Marathon and does occasional speaking engagements. “I went back and forth for a while on speaking to people, because part of me thinks that yes, college students or high school students would think, ‘Oh my god, she’s just like me,’ or ‘just like my neighbor, and that could totally happen to me,’” Jennifer says. “On the other hand, I see it as, ‘Well, she’s healthy. She looks good. She looks fine. Obviously, it’s not that big of a deal if you have it.’ That’s what I don’t want people to think.”
Antiretrovirals are no sugar pills. Nearly every HIV medication has nausea and diarrhea listed as side effects, and some can also cause lactic acidosis (high levels of acid in the blood), lipodystrophy (fat redistribution), and liver damage. Plus, HIV medications can cost as much as a monthly car payment on a brand new Bentley. And because of individual chemistry, viral mutations, and drug resistance, there’s no panacea; most patients have to take a combination of a few of the 34 HIV medications on the market. Three of the most common – Atripla, Complera and Fuzeon – cost more than $2,000 each per month.
Most insurance typically covers 80 percent of prescription costs, but that could still equal as much as $800 a month out-of-pocket. Those without insurance must seek help from government assistance programs, which have eligibility restrictions. The AIDS Drug Assistance Program (ADAP), for example, is available only to those whose monthly income does not exceed 300 percent of the federal poverty level (or $33,510 a year for a family of one). Ryan White programs are similarly “payer of last resort” programs for those at poverty level. And recent legislative changes to AHCCCS have discounted all childless adults (including an estimated 1,300 HIV patients).
Only 25 percent of HIV-positive people in the country are managing their disease to the point where their viral loads are undetectable. “The cost of medications is one huge factor,” says the Southwest Center’s Carol Poore. “If you’re in what they call the ‘donut hole,’ and you don’t have insurance but you’re not so far under the poverty line that the Ryan White Act would cover your medications, then you’re in this little gap area.”
Down the Donut Hole
Ken Bethel knows the perils of having HIV and living without meds and support services. The 52-year-old athletic heterosexual was another person who didn’t think HIV would happen to him and caught the virus through unprotected sex. Even after he was diagnosed in 2004, he says, “I kind of forgot about it. I’m one of those people that had never really been sick.”
But in June 2010, Bethel, who wasn’t taking HIV medications, noticed he was tired all the time and losing weight. He attributed the symptoms to working odd hours and not eating well. He had a fever of 104 but figured he just had a cold and could “flush it out” of his system. By early July, the 6-foot-4 man had dwindled down to 165 pounds, and a friend insisted he seek medical care. Bethel was admitted into Banner Gateway Medical Center in Gilbert, where he says he was diagnosed with full-blown AIDS, and had a death’s-door CD4 count of seven. The day after he was discharged from the hospital, he tried to commit suicide. After an unsuccessful attempt, he was sent to a psychiatric hospital before admitting himself to Banner Thunderbird. While there, someone from Care Directions, a local organization that provides case management for HIV-positive people, came to visit him and provide information on medical care. “[That] made me feel good, that they came to me,” Bethel says. “That made me feel important, made me feel like somebody cared.”
Because he was uninsured, Bethel was enrolled in the Ryan White Part A program, referred to a physician, and started on antiretroviral medications. Within three months, he had a CD4 count nearing 200, and his viral load – measured at half a million when he was in Banner Gateway – dropped to just over a thousand. When Bethel first visited his doctor at the McDowell Healthcare Center, her optimism shocked him. “She goes, ‘What are you worrying about? We’re gonna do this and this, and you’re gonna be fine,’” Bethel recalls. “She calmed me right out.”
Today, local HIV/AIDS nonprofits like Care Directions and Southwest Center for HIV/AIDS are feeling the strain of budget cuts. Under the Ryan White Care Act, the federal government provides money to states for medical care of HIV-positive patients. In Arizona, those funds go to the Ryan White Part A program, and are managed by the Ryan White Part A planning council. Ryan White programs fund treatment only when no other resources are available to a client. But as “other resources” disappear, Arizona’s Ryan White Part A program has seen an increase in clients, which has unfortunately not been accompanied by an increase in funds (the program this year received a quarter of a million dollars less than last year).
Rose Conner, program manager for the Maricopa County Ryan White Part A program, says the program currently serves about 3,500 clients, and averages an 8 percent increase in enrollment annually. “The big impact for us this past year has been the changes to AHCCCS eligibility requirements,” Conner says. “As childless adults have been dis-enrolled from AHCCCS, those clients then become eligible for medical care services through Ryan White Part A. So when they come to us for primary medical care, then we have to reallocate funds from other services to primary medical care.”
When the planning council sat down last October to decide how to disburse funds, they had to eliminate funding for several support services, including food boxes, legal and psycho-social services, community outreach and transportation support. “Those cuts all really relate to the need for additional funds for primary care, because the program has seen a big increase in clients who require those medical care services,” Conner explains.
“[Government] money is shifting toward getting people tested, and if they’re diagnosed with HIV, to help them get navigated into ongoing health care and medication,” says the Southwest Center’s Poore. Though the center does not provide primary medical care, they work closely with clients’ primary care physicians and offer a host of important supportive services, such as nutrition counseling, acupuncture, and clinical trial research for new HIV medications. The center serves 70 percent of Arizona’s at-risk and HIV-positive people (or roughly 10,500 clients), but they’re also operating on an attenuated budget.
Before 2008, government money was more equally disbursed between both primary medical care and prevention education. Now, no money is going toward prevention education. As that shift has occurred, rates of HIV infection – particularly among minority groups – continue to rise. According to ADHS, 55.9 percent of HIV-positive people in Arizona with unmet primary medical care needs are “White Non-Hispanic.” The other 44.1 percent are predominantly Hispanic (25.9 percent), African-American (11.7 percent), and Native American (3.5 percent). In the case of minorities, particularly in rural areas, there’s still a lot of stigma regarding HIV/AIDS, which can prevent someone seeking testing or treatment. “Certainly minorities in underserved communities, in particular, are much more vulnerable. African-American women are seven times more likely to be infected with HIV/AIDS, according to state statistics,” Poore says. “And it’s between the ages of 25 and 45, roughly. In their particular communities, it’s an embarrassment or it’s a shame or taboo... culturally, ethnically, it’s just not common to talk about HIV and AIDS. But yet it exists, and so we’re concerned about the ethnic and diverse groups that are not talking about this issue.”
Another area of concern is the estimated number of people in Arizona who are unaware of their HIV-positive status. Statistically, one in five people infected with HIV don’t know they have it. This is why testing is so important, regardless of whether or not a person thinks they’re in a high-risk group. “It is very important to get tested at least once a year if you’re sexually active, and once in your lifetime between the ages of 13 and 65, they recommend,” says Sheree Denny, Early Intervention Specialist at the Southwest Center. “The more active you are, the more often you should get tested.”
If a person tests positive, there’s a push to get them into primary medical care. “If they do not have medical [insurance], they can apply for programs to help them with medical,” Denny says. “So that we can get everyone into care, because the sooner they get on meds, the less likely they are to pass the virus.”
After taking antiretrovirals for a few years now, Bethel’s viral load is undetectable, and he serves on the board of the Ryan White planning council and as a mentor for other HIV-positive people. The main point he tries to make with newly-diagnosed HIV patients is the same, often revelatory point his doctor made to him years ago. “It’s no longer a death sentence. As long as a person takes his medication and does what he’s supposed to do, you’ll live to the grand old age of 135.”
Mind the Gaps
When it comes to educating minority communities about HIV/AIDS, Karen Reddick believes in the power of the barbershop. Currently the Manager of Education & Women’s/Youth/Family Programs at the Southwest Center, Reddick formerly did community outreach in Pittsburgh. “One of the things that I started [there] was what I called minority business outreach. I found mom and pop stores that had been in the community for years, had a relationship with them, educated them about HIV and AIDS, and they in turn became portals of distributing information... We did the same thing with barbershops and hair salons,” she says. “If you go to your barbershop, often times folks will say stuff to their barbershop they won’t say to their doctor, because they don’t go to a doctor. You really need to go where folks are.”
To that end, Reddick and the Southwest Center also work with minority organizations. For World AIDS Day last March, the Southwest Center partnered with the East Valley NAACP at the Phoenix Urban Expo, where they offered HIV testing and risk assessment. “It’s those kinds of connections that starts to bring this issue into the community from trusted providers,” Reddick says. “It gives us some credibility to let them know who we are and what we do. It takes a long time to build those kind of relationships, but that’s how you start.”
The Ryan White planning council has also noted at-risk minority groups and attempted to bridge gaps in communication and care. “We have three minority groups that we have as high priorities in our community: African-Americans, Hispanics and Native Americans,” Rose Conner says. “We have contracts with agencies that focus their programs on those minority groups, so we can contract with Phoenix Indian Medical Center to provide not only medical services but also case management of their HIV-positive clients. We have contracts with Chicanos Por La Causa to do case management of their clients, and we have provided outreach services with them. And then Ebony House also provides case management and outreach services to the community.”
One group seldom mentioned in conversations about HIV/AIDS is the incarcerated. A study by ADHS revealed the HIV/AIDS prevalence rate among prisoners is four times the rate of the state’s general population. To help prevent the spread of HIV in prison and get HIV-positive prisoners into medical care, the Ryan White Part A program collaborated with ADHS to launch an opt-out pilot testing program in November 2011. Prisoners can choose to have an HIV test as part of the routine physical they receive after being in jail for about 10 days. “They’re given the opportunity, and we find that the majority of clients do agree to be tested at that time,” Conner says. Since the pilot started, Conner says the testing program screened 17,674 individuals and identified 356 newly-diagnosed HIV-positive inmates. Those inmates were then provided with counseling and linked to medical care. The program was continued for 2012, and Conner hopes to continue receiving funding for the testing.
Lack of access to care is also a concern in Arizona’s rural areas. Research by the Arizona AIDS Education and Training Center suggests a dearth of training programs and interest in HIV practices from family physicians, which could create a shortage of HIV/AIDS care providers. In response, the University of Arizona partnered with rural communities like Whiteriver and Tuba City to improve HIV specialization with telemedicine. ADHS has called for expansion of telemedicine consultation to even more rural areas. Meanwhile, the Ryan White planning council partnered with Aunt Rita’s Foundation to establish hivaz.org, which provides information on testing locations and guides to accessing medical care.
But the prime factor affecting Arizona’s HIV services is still money. As patients have been dropped from AHCCCS, caseworkers are scrambling to find alternative options for clients, primarily the new federally administered Pre-Existing Conditions Insurance Plan (PCIP), which ADHS has also been promoting as “a low-cost alternative to being uninsured.”
The good news is, sometimes when government programs falter in funding, corporations and private citizens excel in charity. This is certainly the case in Arizona, where companies including US Airways, Molina Fine Jewelers and APS donate money to HIV/AIDS organizations, and well-heeled residents like late Mortgages Ltd. CEO Scott Coles, Weight Watchers of Arizona CEO Bob Machiz, and GoDaddy.com founder Bob Parsons have contributed generously to the cause. “The government funds are constantly decreasing, so what happens with the nonprofit is, we have to go out and try to get individual and corporate support, and really tell our case and our story,” says Mesha Davis, chief development officer at Southwest Center. “So right now at Southwest Center, half of the money we see comes from individual giving, corporate giving. So although the economy seems to still not be going in the right direction, people are still giving, and they’re generous.”
Bob Parsons and his wife, Renee, are huge supporters of the Southwest Center. Last year, through The Parsons Foundation, they made the largest contribution from a single donor in the center’s history: a combined $5 million, including a vow to match other donations up to an additional $1.5 million. The money is being used to create the Bob & Renee Parsons Foundation Center for Health, Education and Wellness on Central Avenue. “Bob and I hope others will be inspired to help the Southwest Center for HIV/AIDS,” Renee Parsons told Business Wire. “Patients at our new center are going to get some of the best care available anywhere in the U.S.”
With a targeted opening date in July, the building will house the Southwest Center for HIV/AIDS (currently at 12th Street and McDowell Road), a clinic, a pharmacy, Sonoran Quest blood lab, and a space where the public can come on First Fridays. “We see it being a very warm and friendly place, to help reduce stigma around HIV and AIDS,” Poore says.
The new center represents a huge step forward for the local HIV/AIDS community and has inspired hope that, despite the budget cuts, life can and will go on for Arizona’s HIV-positive population. There may not be a government cash cow, but there’s still a community. And hope and community are just as vital to survival, Ken Bethel says. “It’s a lot of chess playing right now, but unfortunately, the people being moved – the pawns – these are clients. They’re just being taken out of the equation. And we can’t do that. We have to keep our eye on the prize. People are very fragile when it comes to this disease. They don’t know which way to turn, which way to go.”
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