Dispatches from the fight against homelessness and AIDS
Posted by Elizabeth Koke , February 07, 2017
The following remarks were presented by Housing Works President and CEO Charles King at the Hepatitis C Elimination Summit in Albany, New York on February 7, 2017:
Good morning. Welcome to New York State’s first Hepatitis C Elimination Summit. I want to note that today is National Black HIV/AIDS Awareness Day. Given the disparities in both HIV and Hepatitis C, I believe it is wholly appropriate that we have chosen this day to focus on elimination of Hepatitis C.
In August, 2013, a group of about 30 of us, including some who are in the room today, met on the 2nd Floor of the Capitol with then Deputy Secretary for Health Courtney Burke to make the case for Governor Cuomo committing to ending AIDS as an epidemic in New York State. Courtney enthusiastically welcomed and endorsed our proposal and quickly pivoted to talking strategy for advancing the idea.
As we filed out of the room, Courtney pulled me aside. “Do you think,” she asked, “we could eliminate Hepatitis C at the same time as we are ending HIV?” The drugs for Hep C weren’t as good as what we have today. And the barriers seemed insurmountable. “Let’s get Ending the AIDS Epidemic up and running first,” I said. “But I promise, we will revisit this.”
Then December 2015, Dan O’Connell and I had a phone conversation, debriefing about a meeting some of our advocates had the day before with Paul Francis, Courtney Burke’s successor. In the course of that conversation, I reminded Dan of my earlier conversation with Courtney. “Do you think the time is ripe to call for Hep C elimination,” I asked. “I think so,” Dan said in his laconic manner.
That conversation kicked off a series of calls and meetings between the AIDS Institute, the New York City Department of Health and a hearty band of advocates, that has culminated in today’s gathering. I want to thank Courtney and Dan for their encouragement, and I want to thank the AIDS Institute and DOHMH staff and the entire steering committee for bringing it all together today. I would also like to thank Dr. Howard Zucker, Arlene Sanchez, and Dr. Jay Varma both for their respective institutions’ support for this effort and for taking the time to be with us this morning.
Finally, I want to thank all of you for being a part of this, including all of our presenters, everyone sitting in the room, and everyone participating remotely. But, I should also give you a word of warning. By your participation, we are assuming you have signed up for the long haul. Today is just the beginning of a process that we will be able to celebrate only if our Governor and our State make a meaningful commitment to eliminate Hepatitis C. We will be counting on all of you to do your part to make that happen.
Over the course of the day, you will hear “how” we can eliminate Hepatitis C and “what” we will have to do to accomplish that goal. But that’s not my role. I am here to tell you “why”. Very specifically, I want to give you three reasons why we need to set our course today for Hepatitis C elimination.
The first reason is because we can. I have been an AIDS activist for now more than 30 years. I came to the fight against AIDS not because I am a gay man who was at risk and am now positive, or even because it was impacting my community. Rather, I came to the fight because AIDS struck me as the single most important social and economic injustice of my day. It is, after all, just a virus. But it is a virus that is spread through fear, ignorance and stigma. Its pathways run through racism, sexism, homophobia and transphobia. While it is technically true that anyone exposed can contract the virus, those who tend to get it are the most marginalized and disenfranchised. That is even truer today than it was 30 years ago.
We organized, we fought back, we collaborated with the medical world, with pharma, and government until we had the science, the care and the infrastructure to take care of our own, at least here in New York. And, even without a vaccine or a cure, four years ago, we committed to end AIDS as an epidemic here in our State, and, if you look at the 2015 data, you see that we are actually getting it done!
My friends, we have as much as double the number of people in this State living with Hepatitis C as we have people living with HIV. And many of the same risk factors, particularly stigma against people who use drugs, but also poverty and disenfranchisement, often rooted in the same drivers as for HIV. We may not have the same infrastructure today for Hepatitis C. But we have a cure – a cure that works for almost everyone infected, and that cures 40% of people infected in just eight weeks! We can take our existing HIV and drug treatment infrastructures and build them together to create what we need. Even the cost of treatment should not be a barrier if the state and industry can come together. All we need, really, is the political will to make it happen.
My second reason is because it is the right thing to do. Since we have a cure that is nearly universally effective, no one should need to suffer fibrosis due to this virus. No one should need a liver transplant to survive due to this virus. And no one should have to die because of this virus. And yet it continues to spread to thousands of people each year because persons who are infected either don’t know their status or lack access to treatment. We have the collective power to change that!
As most of you know, I am a Baptist preacher. Now Baptists have a deservedly bad reputation for being quick to condemn and call out sin, things like sexual impropriety, gluttony, gambling and intoxication. Well, I am not of a mind to call out personal failings that we all experience as humans. But I do believe in sin, especially collective sin. My faith teaches me that it is a sin to abandon the orphan; it is a sin to reject the stranger; it is a sin to neglect those who are homeless or incarcerated; it is a sin to ignore those who are addicted to drugs, it is a sin to not offer healing to the sick when healing is available, and, indeed, it is a sin to price treatment so high that those who need it the most cannot afford it.
The Christian Epistle of James reads, “Whoever knows the right thing to do and fails to do it is guilty of sin.” I do not believe the Divine, however you imagine it, will look kindly on us if we ignore our obligation to do what is right in this instance.
My third reason is because now is the right moment in history. That might sound a bit counter-intuitive to you if you have been following current events. We live in a time when our nation seems to be closing its doors to the world, whether to free trade or refugees, a time when fear and insecurity dictate our every step. We live in time in which we have become small-minded about what We the People can do together, when every positive change accomplished over the last eight years is up for grabs. The Affordable Care Act is on the chopping block, Medicaid and Medicare need to shrink, we are told, even while plans are laid to slash funds that serve poor people, while cutting both regulation and taxes on the wealthiest among us.
“Shouldn’t we at least wait and see how all of this will impact New York,” some ask. But the answer is clear. We must not give in to the impoverishment of spirit that is pervading our land. I am sure many of you have already joined in protest to say “no” to what is happening at a national level. But, important as protest is, we must do more than that! We must set forth an example that demonstrates our generosity of spirit. We are not a State that turns its back on the least among us when times get tough. We are not State whose commitment to address disparities in health shifts with changing fortunes of political parties is our nation’s capital.
New York is a community that not only embraces diversity, but that embraces wholeness and opportunity for everyone. We are State that is capable of leading the way, whether it is opening our doors to immigrants, affording marriage equality, ending the AIDS epidemic or eliminating Hep C. In a time of fear and retreat, we here in New York are called to show what we can do together through collective will. We are called to show the best of what democracy looks like. We must lead, we must not only end AIDS, but eliminate Hepatitis C.
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