Legislators, advocates commemorate Ryan White CARE Act anniversary


A panel of legislators and advocates talked about the importance of the Ryan White CARE Act, which turned 30 this week. Photo: Liz Highleyman via screengrab
A panel of legislators and advocates talked about the importance of the Ryan White CARE Act, which turned 30 this week. Photo: Liz Highleyman via screengrab  

Legislators and advocates commemorated the 30th anniversary of the Ryan White CARE Act this week with a virtual forum sponsored by Vivent Health and the National AIDS Memorial Grove.

The Ryan White CARE Act (also known as the Ryan White HIV/AIDS Treatment Extension Act of 2009) is the largest federal program to provide care, treatment, and support services to people living with HIV who are uninsured or underserved.

"Today, we mark two important milestones for the LGBTQ community and for our country: the passage of the Ryan White CARE Act, which has been an essential lifeline for those living with HIV/AIDS, and soon, 35 years since the creation of the AIDS quilt," House Speaker Nancy Pelosi (D-San Francisco) said in her welcoming remarks during the August 18 virtual presentation. "As we celebrate the progress that we've made over the past 40 years ... we look forward to the progress that remains to be forged."

(The AIDS grove last year took over stewardship of the AIDS Memorial Quilt, with help from Pelosi and the late Georgia Congressman John Lewis (D), as the quilt had been overseen by the now-defunct Names Project in Atlanta.)

The forum featured a panel discussion with lesbian Senator Tammy Baldwin (D-Wisconsin), Congresswoman Barbara Lee (D-Oakland), AIDS United president and CEO Jesse Milan Jr., SisterLove founder and president Dazon Dixon Diallo, and Vivent Health president and CEO Mike Gifford.

Baldwin noted COVID-19 has "exposed anew the health disparities that have existed long before this current crisis" and that have had an impact on people living with HIV since the start of the epidemic.

"Now more than ever, we have to work together to break down the barriers for folks who need access to HIV testing, support, and treatment; renew our fight against long-standing racial and ethnic health disparities; urge our government to gain a greater understanding of health disparities that persist within the LGBTQ community; and fight back against the stigma that has long been associated with HIV," she said.

Panelists emphasized the importance of electing representatives who recognize the importance of fighting HIV and addressing these disparities.

"We have got to make sure that we elect a White House that really understands that we need to move forward to seek an AIDS-free generation," said Lee. "We have got to understand that racial justice and equity is a key component to making HIV history."

Milan noted that despite the progress to date, there are currently 1.2 million people living with HIV in the United States and 15,000 HIV-positive people die every year. Fifteen percent of people with HIV do not know their status and many are not receiving care and treatment. For Black gay men, experts estimate that 60% could be HIV-positive by age 40, and 44% of Black trans women are already living with HIV.

Racial inequities
The HIV epidemic has exposed the importance of LGBT health and rights, racial inequities, and regional disparities, particularly in the South. Stigma also remains a concern, often driven by homophobia and negative attitudes about drug use.

"In this day and age, we should be over this," Milan said. "Stigma continues because people are afraid of what's going to happen to them if they find out they are HIV-positive — whether they're going to lose their job or whether they might risk going to jail for possibly transmitting the virus."

Diallo stressed the importance of inclusion, especially of women with HIV, and ensuring that resources to fight the epidemic "go where the epidemic actually is." Even with all the advances in science and advocacy, "we're still fighting some of those big issues around visibility and inclusion and stigma and discrimination and access to health and making sure that everyone is counted," she said. "What COVID is teaching us is what we already learned in terms of fighting HIV. We have been here before, and there are those of us who know how to do this again, and we will."

HIV must be addressed as more than a health problem, Diallo added. "It is an issue of intersectionality with just about every social justice matter you can come up with," she said. "I'm given so much hope from young people who see HIV as not only a public health issue, but much more as an issue of justice and human rights and dignity and love."

Milan said that the CARE Act is "a model for how health care should be created and distributed in this country," noting that it helped spark the Affordable Care Act and expansion of Medicaid eligibility, although 12 states have not yet taken advantage of the latter.

Gifford stressed the need to look at "the entire safety net people with HIV rely on," and to go beyond that with a health insurance public option and decoupling employment from health coverage. "Health care in this country has got to become a right if we're ever going to get to the end of the AIDS epidemic," he said. "Right now it's a privilege, and that's not good enough."

Asked what gives him hope, Milan said he "looks forward to a generation of people who understand that HIV does not have to consume your life — it can be a part of your life, but it doesn't have to end your life." He added that we know how to stop HIV using tools such as "U=U" (the understanding that people with undetectable viral load do not transmit HIV), PrEP, and clean syringe access.

"We have the tools now — we don't have to wait for a vaccine," he said. "If we could put those tools in everyone's hands, then we will end this epidemic."

In addition to the panel, participants also heard recorded messages from Ryan White's mother, Jeanne White-Ginder — who noted that, 30 years after his death, people are still living because of Ryan — and longtime advocate and AIDS Memorial Quilt co-founder Cleve Jones.

Ryan White was one of the first children to be diagnosed with AIDS in 1984. He was a hemophiliac and his mother fought for him to attend school in Indiana. His died in 1990 at age 18.

The CARE Act, introduced by the late Senator Ted Kennedy (D-Massachusetts) and retired Senator Orrin Hatch (R-Utah) and passed by large majorities of both Democrats and Republicans in the House and Senate, is "a remarkable example of bipartisan leadership," Jones said, showing what can happen "when legislators on both sides of the aisle set aside their differences to do is what is right for the American people."

"Today, advocacy remains critically important in our fight against HIV/AIDS and also the new pandemic of COVID-19," Jones continued. "The reality is that nothing good happens in this country unless people fight for it."

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