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A Call to Unite Around Health Care in the U.S.

June 20, 2014

Sue Saltmarsh (Credit: Chris Knight)

Sue Saltmarsh (Credit: Chris Knight)

People living with HIV, as well as those living with cancer, multiple sclerosis and other chronic conditions that require the care of specialists and adherence to expensive drugs, periodic lab work, regular imaging or outpatient surgical monitoring, may be learning that the coverage available under the Affordable Care Act (ACA) does not equal the care they need.

It is becoming clear that some insurance companies that offer policies on the ACA exchanges are engaging in practices meant to drive HIV-positive and HIV-negative participants who require costly care away from the most affordable plans (though even those are unaffordable for many). Contrary to the stated intent of the ACA, barriers to treatment are not being dismantled by the provision prohibiting denial of coverage to those with preexisting conditions, but rather are being perpetuated, if not exacerbated, by these discriminatory practices. People living with HIV have long struggled with the barriers to care and treatment that are created by ignorance, fear and stigma. Now, the financial barriers may be as insurmountable to some as those other obstacles that have fueled the epidemic since its inception.

As reports come in of HIV-positive patients finding out that their Atripla (efavirenz/tenofovir/FTC) isn't covered under the one plan they could afford or that there are no HIV specialist providers -- let alone the ones they've seen and trusted for years -- in their plan's network, there is also word of cancer patients having the same problems with medications being priced out of reach and oncologists being dropped; of doctor-recommended MRIs not being covered in favor of cheaper and less effective X-rays; and of the number of covered visits to a mental health provider being decreased.

The HIV community has the advantage of three-plus decades of effective activism and governmental intervention with Ryan White programs that people with other diseases don't have. Complaints have been filed by HIV advocacy organizations against the unfair drug pricing of some states' exchanges and those living with other chronic illnesses are watching to see what happens.


I ask, "Why just watch?" As someone living with a chronic disease, I don't want to just watch the HIV community fight this battle for me and the millions like me who need their own specialists and are kept alive by condition-specific medications and treatments -- I want to learn how best to fight it with them.

The anger and grief that fueled the first ACT UP demonstrations may be reenergized in a whole new way by the injustices perpetuated by our current system. I believe it is now beginning to seep past the boundaries of the HIV community as more Americans get sicker, go bankrupt and lose loved ones.

Some would say, "Not my fight," caring only about how the health care system affects them personally. Ken Kenegos, an activist with Health Care for All - Texas, contends that health care is everybody's issue. "You got a body? You're involved," he says.

I believe that, though HIV may be among the most feared, even hated, diseases in human history, it may also lead the way to a great healing. If a homophobic father dying of lung cancer can find common cause with his gay, HIV-positive son; if a conservative businessman struggling with diabetes can recognize the struggle of a liberal employee with AIDS; if a black woman with heart disease who goes without food to pay for her medication can see a hungry white woman painstakingly paying for her HIV meds, maybe, finally, the ragged wounds that afflict our society will begin to heal.

Naive fantasy? Maybe. But what if ACT UP stood for All Coming Together in Unlimited Power?

Sue Saltmarsh has worked in the HIV/AIDS field for over 20 years, the first 10 as an herbalist and energy therapist at Project Vida, the last six as a writer and copy editor for Positively Aware magazine. She is now a freelance writer and editor and is also able to devote more time to her passion as founder and director of the Drive for Universal Healthcare (DUH).

Copyright © 2014 Remedy Health Media, LLC. All rights reserved.

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This article was provided by TheBody.


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