The Legacy of Ryan White

RyanWhite_PeopleMagcoverAugust 18th marked the 25th anniversary of the signing of the Ryan White CARE Act, creating a program that has saved the lives of thousands upon thousands of people living with HIV. Earlier this year, Joseph’s House received a Partnership Award from the CAEAR Coalition as they prepared to go on Capitol Hill to advocate on behalf of funding for the program. Accepting the award on behalf of Joseph’s House, I spoke about the continued vital need for this model program as health care reform is implemented.

For over 20 years the Ryan White Program  has been key to our ability to keep the doors of Joseph’s House open. In fact, it is very hard to imagine that our doors would be open tonight without the ongoing investments of those programs — through the DC Department of Health – in our work. The message I hope that all of you will take to your elected representatives is that the Ryan White program is as crucial to the nation’s response to AIDS today as was when it was signed into law in 1990. The program must continue robustly if we are genuinely committed to managing and, hopefully ending, the epidemic.

In Washington, DC, a city/state with one of the highest health insurance coverage rates in the nation, the Ryan White Program remains indispensable. We know well from our life at Joseph’s House that it would be absurd to believe that health insurance alone can provide people living with HIV the support they need to stay healthy and well over many decades.

At a house best known for caring for the dying, it may surprise you to hear that the single largest age group we cared for this past year were men and women ages 30-39. Most came not to die. They came because they were fighting for their lives, and their doctors and nurses knew that we would fight with them. All were engaged in the health care system. All had access to HIV medications. And all were struggling mightily to begin or maintain HIV therapy.

Depression, stigma, shame, substance abuse, homelessness, poverty, illiteracy, incarceration, domestic abuse, medication side effects, and debilitating co-infections. There are so many complicated and intertwined reasons that kept them off treatment.

DC has made significant gains in engaging and keeping people with HIV in care. Sixty percent of DC residents diagnosed with HIV are virally suppressed. That’s real progress. And, there is still a long way to go. Increasing that percentage takes much more than access to health insurance.

It means ensuring that people have a safe place to call home, food on the table, a warm coat and boots to wear to a doctor’s appointment in the middle of a frigid winter.

It means filling pillboxes and sitting with someone for an hour or two or three when fear or shame literally makes them gag on their HIV medications.

It means bathing them and helping them dress when they are too weak or too depressed to do it themselves.

It means giving them a place to live and take medications because the family member on whose sofa they are sleeping puts them out into the cold everyday if they take their HIV meds, because those pills sometimes cause them to soil that couch.

It means walking alongside them during the dark times when they lose all hope, and providing mental health care so they can know and believe that their life is worth fighting for.

The Ryan White Program makes these services and so many others available in our city, as it does in communities nationwide. Services that can make the difference between life and death.

Because of the Ryan White Program at work at Joseph’s House this past year, there are two little boys who still have a mother, there is a woman who is sober for the first time in almost 30 years and is successfully managing her HIV, there is a man who was saddled with a debilitating, life-threatening infection who is looking to return to work, and another whose HIV was raging out of control and now returns to our house every weekend to help out as cook and caregiver, his viral load suppressed. These friends and others are doing well today, but it is a fragile net that holds them aloft. Others of our friends still struggle mightily.

And I would be remiss not to tell you of the critical importance of the Ryan White Program in helping us to care for and support the men and women with HIV who arrived at Joseph’s House last year, and every year, at the end of their lives. There is no simple, shared narrative, but all arrive having lived through many years of hardship and real suffering. Among those we care for tonight is woman who lies dying in the same room where her 22-year-old son died not three years ago. Last year, those who came to us for end-of-life care ranged in age from 23 to 67. Their median age just 53 in a city with a life expectancy of 78. Twenty-five years on average taken from their lives. Our goal was for each of them to know that they were truly at home, in a place where they could be comfortable, at ease, and cared for lovingly and with exquisite attention.

There is no shortage of need today and there will be no shortage of need in the years ahead – 2,500 men and women in their 20s and 30s were diagnosed with HIV in DC in just the past six years. Even with all the incredible progress we’ve made and are making today, for so many people, HIV is only a manageable chronic disease if we make the effort to understand and actually meet their individual needs and to stick with them over what will likely be decades of treatment.

We still have such a long way to go and we have a collective responsibility to speak out loud and often with and for those struggling against tremendous odds.

Joseph’s House thanks you for your strong voices speaking out to keep the community-based response to HIV alive, so that we, in turn, can welcome and support the men and women who arrive at our door fighting for their lives or desperately in need of a final caring place to call home.

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