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Medicalizing HIV: Will Social Services Get Squeezed Out?

Posted: Jan 20, 2012

OAKLAND, Calif. - Major medical breakthroughs over the past year in the treatment of HIV/AIDS are setting off some surprising alarm bells.

While praised for their life-saving potential, they are causing a change in the dynamics of HIV/AIDS care – a shift that may squeeze out social services needed to support patients while they’re in treatment.

The focus in treatment is shifting increasingly towards HIV/AIDS medications and preventative strategies, such as Pre-Exposure Prophylaxis (PrEP) and HPTN 052.

At a recent forum in Oakland, attendees questioned how the new HIV medicines would directly affect their lives.

“It’s exciting, but will it help save lives in our communities?” asked Deborah Royal, a nurse practitioner at East Bay AIDS Center.

Providers and patients agree that advances in medication and a focus on prevention are positive steps towards treating the disease and slowing disease transmission, but also emphasize the importance of what they call “psychosocial” factors in determining whether a person starts and stays in treatment.

“The easy part is prescribing the medication, but how is the patient going to get the medications paid for?” asked Dr. Royce Lin, an HIV specialist who serves on the board of the Asian and Pacific Islander Wellness Center (APIWC). He noted, “if someone is monolingual, if someone is undocumented they may never even make it in the first place.”

Dr. Monica Gandhi, an HIV and primary care provider at Ward 86, one of the oldest and largest HIV/AIDS clinics in the country, pointed to several barriers that commonly prevent female patients from adhering to treatment protocols. “Gender based violence, poverty, social instability around taking care of children and not having social supports themselves prevent women from staying in treatment.”

When 24-year-old HIV positive Berkeley resident Xavier Erguera was couch-surfing while in search of a permanent home last summer he went two months without taking his medications, the longest stretch since he began treatment, “My biggest concern wasn’t taking my meds, but finding where I was going to sleep and where my next meal was. Once my life stabilized I could start taking care of myself again.”

“Health is not your top priority when you’re on the streets,” declared Loren Jones, a 60-year-old Berkeley resident who was homeless when she tested positive for HIV 28 years ago.

Jones commented on the need for peer advocates to help patients navigate the complex medical system, “There’s only so many things that one person can handle, especially when they have no money. You need services where someone streamlines paperwork for you and helps you get through the process without making you feel bad about yourself.”

The Pendulum Swings Toward Treatment, Not Social Services

The U.S. Department of Health and Human Services will soon release updated HIV treatment guidelines. The expectation is that the new guidelines are likely to recommend that patients begin treatment sooner than is the case now.

“The pendulum swing towards earlier treatment could come at the expense of other services,” said Lin. “Prevention efforts through education have been reduced and support to CBOs is significantly down. Many organizations have had to merge or close down.”

Service providers also question how they will handle the anticipated increase in patients steered to earlier treatment without an increase in funds.

“Already at our large clinics we’re feeling at capacity and our concern is we’re going to need to provide services to larger numbers of people with dwindling resources,” said Royal. “It’s a miracle that we have these drugs and yet that is not going to solve this issue.”

The APIWC has faced both a reduction in case managers as well as drastic funding cuts to their training programs to teach providers how to better serve their positive patients.

“We used to do over 20 trainings, now we do five,” said Jane Daludugan, the community development program manager at APIWC.

According to Lin who sees patients at the Tom Waddell Health Center and Tenderloin Health, “One of the main places we’ve felt cuts is in the reduction in the wrap-around services that try to engage and bring patients into care and to support patients as they are going through their treatment.”

Lin continued, “There is nothing here that is non-essential. What do you do when there isn’t fat to trim?”

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