As Senate Health Care Vote Looms, HIV Groups Raise Alarm

Jesse Milan, Jr, J.D., the president and CEO of AIDS United, backed by Monique Tula, executive director of the Harm Reduction Coalition with her fist in the air, Naina Khanna, executive director of the Positive Women's Network - USA, and Tyler TerMeer, executive director of the Cascades AIDS Project
Drew Gibson

The U.S. Senate publicly unveiled its version of the American Health Care Act (AHCA, also known as Trumpcare), the Better Care Reconciliation Act of 2017 (BCRA) on June 22. HIV advocacy organizations, health care groups and community leaders reacted swiftly; many expressed staunch opposition to the bill, much as they had to the House of Representatives' version, which ultimately passed on May 4.

Here's what the community is saying about the Senate's AHCA bill, which will replace the Affordable Care Act (ACA, also known as Obamacare) if it's approved. We'll keep this article updated throughout the run-up to a vote on the bill, which may take place before July 1, according to The New York Times.

HIV Organizations React

From AIDS United:

It is unacceptable that the real goal of this legislation is to create tax cuts for wealthy individuals rather than to achieve any specific health goal. By removing nearly $1 trillion, primarily from Medicaid, the BCRA will ultimately starve the states and eventually individuals of funds creating a loss of eligibility and benefits for all people including people living with HIV. Medicaid is the largest source of insurance coverage for people with HIV, estimated to cover more than 40% of people with HIV who are in care. The Senate bill will start to phase out the Medicaid expansion in 2021, eventually ending subsidies for the expansion entirely. The bill would additionally impose a per capita cap to federal funding for Medicaid to the states. It then ties the cap to unrealistic measures of inflation that will greatly lower the funding rates that states receive. The Senate bill actually goes further than the House bill in cutting the federal contribution to Medicaid by further tightening the cap in 2025. The states will be forced to cut services and end eligibility for many people, potentially including people living with HIV. This is the end of Medicaid as we have known it since its inception in 1965.

From Human Rights Campaign:

THE VOTE TO REPEAL THE ACA IS DELAYED -- KEEP THE PRESSURE ON TO SAVE THE ACA! Senate GOP leaders have delayed a vote on the disastrous Trump-Pence-McConnell effort to destroy the Affordable Care Act (ACA), which would disproportionately affect the LGBTQ community as well as millions of other Americans. But just because the vote is delayed doesn't mean you should take a break, too! Text "Save ACA" to 30644 -- you'll be connected to your senator to urge them to oppose this repeal effort. Because of the ACA, thousands of low-income LGBTQ people, including those living with HIV, have been able to obtain health insurance through the Medicaid expansion, and many rely on essential services provided by Planned Parenthood. Last week, HRC strongly condemned the hatched-in-secret proposal to gut the ACA and defund Planned Parenthood, undermining life-saving access to health care for as many as 23 million Americans.

From Federal AIDS Policy Partnership:

The BCRA would return America to a time when healthcare coverage was out of reach for too many people with HIV. The bill would cut billions of dollars from healthcare programs and offset billions of dollars through tax cuts, by retreating on the federal commitment to the Medicaid Program; phasing out of the Medicaid expansion; eroding key consumer protections that ensure access to essential services; reducing premium assistance for lower income individuals; and ending cost sharing assistance. Together these changes would be devastating to many people with HIV who would be left without affordable healthcare coverage options and would reverse recent gains in reducing HIV incidence and improving outcomes.

From a press release by Housing Works:

As the Senate continues to work on its now-delayed repeal the Affordable Care Act (ACA) and end Medicaid as we know it, patients with pre-existing conditions, people living with HIV, and people impacted by Medicaid cuts, joined by doctors, nurses, and medical students occupied key Senate offices on Wednesday, June 28. Waves of constituents who will die if the Senate bill is passed put their bodies on the line today, blocking the entrances to the Capitol Hill offices of Senators Cotton (AR), Toomey (PA), Murkowski (AK), Gardner (CO), Rubio (FL), and Portman (OH).

"If this bill passes, I will die," said Kati MacFarland from Arkansas. "I'm a 26-year-old student living with incurable pre-existing conditions that have put me in a wheelchair, now with a feeding tube and a port for my medicines. I'm a photographer, a violinist, a vocalist, and active in my school and church. With the health care I have now, I can survive and be a doctor some day. I can live my life and have a family and be productive. If Senator Cotton votes to dismantle Medicaid as a right and undo expansion, then he will have voted to crush my dreams."

From an open letter to the U.S. Senate by the HIV Medicine Association:

We see first-hand the high cost of being uninsured in the United States. Without healthcare coverage, patients are more likely to present late with diseases that would have been manageable if identified and treated earlier. For individuals with HIV, late diagnosis can result in a substantial decrease in life expectancy, often leads to dramatically higher healthcare costs with complex hospitalizations and loss of productivity and increases their risk of transmitting the virus to others. Similar consequences occur for conditions that are even more common among Americans, including cancer, diabetes, hepatitis C, heart disease and mental health and substance use disorders.

We appeal to you to consider the long-term impact of your upcoming vote on a healthcare bill that will leave millions of Americans, many of them low income, without healthcare coverage. Please vote NO on a healthcare bill that will repeal and reverse healthcare coverage gains.

From a joint press release by Positive Women's Network - USA, HIV Modernization Movement - Indiana, National Working Positive Coalition, Positive Iowans Taking Charge (PITCH), Positively Trans, Prevention Access Campaign (#UequalsU), RiseUpToHIV, Sero Project, and U.S. People Living with HIV Caucus

We implore people living with HIV (PLHIV) and everyone who loves us to take IMMEDIATE ACTION to contact your Senators to kill the AHCA. PWN-USA has put together a #KillTheBill Resource Center to provide you with the tools you need to make an impact.

This is not exaggerated rhetoric. This is not a rehearsal. This is for real. The AHCA is so catastrophic that 6 members of the President's Advisory Council on HIV/AIDS (PACHA) resigned in protest late last week. If you get insurance through Medicaid or the Affordable Care Act (an insurance exchange), you personally are at tremendous risk.

From National Alliance of State and Territorial AIDS Directors senior manager of communications Kyle Taylor:

Despite promises that the Senate process would produce a less damaging version than the House, in its cruelty and staggering cuts to coverage for low-income Americans, the Senate bill is very similar to the House-passed American Health Care Act (AHCA).

The bill, if enacted, will have disastrous consequences for public health programs and the people they serve, not to mention our nation's ambitious efforts to end the HIV and hepatitis epidemics.

From Human Rights Campaign:

"If the Trump-McConnell health care bill becomes law, it will threaten the lives of countless Americans," said HRC President Chad Griffin. "For LGBTQ people, who already face health care disparities, this proposal is downright dangerous. Both the House and Senate versions of the bill gut core provisions of the Affordable Care Act and cut off tens of millions of Americans from life-saving health care coverage while increasing out-of-pocket costs. This unconscionable proposal -- drafted behind closed doors, without public input -- is a disturbingly harmful bill that Senators must reject."

WATCH: HRC released a new video on the consequences for LGBTQ people.

From APLA Health CEO Craig Thompson:

APLA Health and many other health centers and HIV support organizations cannot simply raise funds to cover the money that would be lost if these cuts happen. Many of them would be forced to turn the people who need them most away.

We need to reach out to our Senators and have our stories told. We need to reach out and hold hands with our neighboring states and have our stories heard. We must continue to reach out and educate.

From SERO Project director Sean Strub (received via email and reposted with permission):

Whether or not the ACA gets repealed and Medicaid gutted will be determined in the next week based on the votes of a handful of Senators in six states.

Another way of saying the same thing is: Whether or not millions lost their health coverage, PLHIV die and the epidemic explodes will be determined in the next week based on the votes of a handful of Senators in six states.

Share the message, look at the list of Senators and make your calls, set up appointments and actions, post, share, tweet, talk, shout and scream if necessary.

The lives of tens of thousands of PLHIV depend on it.

From a joint press release by AIDS United, NASTAD, the National Council of STD Directors, NMAC, and The AIDS Institute:

This bill creates a false narrative that says it will help people with pre-existing conditions, but instead it allows states to waive essential health benefits such as vital prescription drugs, mental and behavioral health services, and preventive services. These cuts would allow insurers to deny the services people who are living with and who are at risk for HIV and STIs need to stay healthy.

From The AIDS Institute:

Thanks to the ACA and its coverage of preventive services, HIV testing is free for most people who have health care. Routine HIV testing is covered by private insurers, Medicaid and Medicare since it has received an "A" grade by the United States Preventive Services Task Force (USPSTF). But if someone does not have health coverage, they will not be able to access preventive services like HIV testing. Congress is currently considering legislation that would result in up to 23 million people losing their health coverage.

"Today we are recognizing the importance of HIV testing, while at the same time, Congress and the Administration are working to repeal many aspects of the ACA that will result in millions of people losing coverage and limit a person's ability to get tested, find treatment, and ultimately live a long and healthy life. Thus, providing another reason why Congress should reject their current efforts to repeal the ACA," concluded Schmid.

Posted on Facebook by Rise and Resist -- members of Rise and Resist, ACT UP, Center for Popular Democracy, and Housing Works stormed several Senator's offices in Washington today to say #killthebill #medicaidnotmillionaires:

Posted on Twitter by HIV Prevention Justice Alliance:

Posted on Twitter by SisterSong:

Posted on Twitter by National AIDS Housing Coalition:

HIV Community Reactions

Posted on Twitter by Lee Storrow, executive director of North Carolina AIDS Action Network:

Posted on Twitter by Scott Schoettes, one of the six people who recently resigned from the Presidential Advisory Council on HIV/AIDS (PACHA) and the primary author of the Newsweek op-ed announcing it:

Posted on Twitter by activist and filmmaker Marco Castro-Bojorquez:

Posted on Twitter Kevin Rogers, policy director at Action NC:

Posted on Twitter by HIV advocate and blogger Reggie Smith:

Other Reactions and Analyses

From Congresswoman Barbara Lee (D-CA):

It appears that Senate Republicans have done the impossible: they've made a morally bankrupt, heartless health care plan even worse.

Members of Congress should take heed: they work for the American people, not health insurance CEOs. I urge our leaders on both sides of the aisle to reject this inhumane, anti-health bill and stand up for the working families they were elected to protect.

Posted on Twitter by Senator Bernie Sanders (D-VT):

Myles Helfand is the editorial director of and Follow Myles on Twitter: @MylesatTheBody.

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