A Conversation with Carl Schmid

Schmid, a long-time leader in the HIV advocacy world and executive director of the HIV+Hepatitis Policy Institute, says a national program to promote and cover the costs of preexposure prophylaxis (PrEP) is desperately needed.

Carl Schmid is the executive director of the HIV+Hepatitis Policy Institute, a patient advocacy group whose funders include Pfizer, Gilead, Bristol Myers Squibb and several other pharmaceutical companies. Schmid has more than 20 years of experience advocating for HIV patients in Washington, including 16 years leading the AIDS Institute and building up its federal team. He is a cancer survivor and is living chronic hepatitis B.

Schmid has been a member of the President’s Advisory Council on HIV/AIDS under three administrations and served as its co-chair from 2018 to 2021.

What do you believe lawmakers should be doing to end HIV in the United States?
In addition to ensuring people have access to affordable and quality health care coverage, such as private insurance, Medicaid and Medicare, it is important that lawmakers fully fund the numerous domestic HIV programs that ensure there is adequate care and treatment for people living with HIV, such as the Ryan White HIV/AIDS Program, and prevention programs, including HIV testing, at the CDC. With the proper funding, we can end HIV.

What are some recent efforts for getting to this point?

There is a concerted effort begun under the Trump administration to end HIV by 2030 with focused prevention, testing, care and treatment programs in the jurisdictions most impacted by HIV. This will take additional funding and Congress can ensure the goals of ending HIV can be met with the funding needed and proposed by President Biden. However, there is one element of the plan to end HIV that has not been adequately supported and that is a national PrEP (preexposure prophylaxis) delivery system. PrEP are drugs that prevent HIV but not everyone who should be taking PrEP is utilizing it. This is particularly true for Black gay men and women and Latino gay men.

Congress has been very supportive of funding the Ending the HIV Epidemic initiative but not at the levels needed to meet the goals of ending HIV by 2030 and proposed by both Presidents Trump and Biden. Even with the dedicated funding for these efforts, COVID-19 put a monkey wrench in our plans to accelerate HIV elimination. But there are many competing interests and needs by so many communities. We hope as they finalize the spending bills for this year, they will maintain the proposed funding increases.


What would it take for the government to fund a national program?
President Biden has proposed a 10-year $9.8 billion new mandatory spending program that would fund a national PrEP program that covers medications, the office visits and ongoing associated lab work, along with community and provider outreach. Congressional passage of such a program — the legislative text hasn’t been developed yet — will take time to consider.

There are also congressional bills that would establish PrEP grant programs that public health entities can apply for. These programs are centered on the people eligible for PrEP who are uninsured and underinsured. Whatever happens, additional money will be needed and that is what we are pressing for right now.

How close are we to something like that happening?
Congress is considering the fiscal year spending bills now. Money is tight, and they have proposed increases for the Ending the HIV Epidemic initiative and other ongoing domestic HIV programs. We will continue to push for dedicated PrEP funding so that CDC and its grantees can undertake a national PrEP program, but if that does not happen this year, we must make sure CDC uses some of its existing dollars to support PrEP. Congress has also supported funding for community health centers to do more PrEP work and is considering increases this year to expand that work. We must also ensure that since PrEP is a USPSTF (U.S. Preventive Services Task Force)recommended service, private insurers must not charge beneficiaries for any costs for both the medications and the associated office visits and labs.

Where would you like to see more focus?
We desperately need a national program to promote and cover PrEP. We have established successful programs, such as the Ryan White Program, that provides care and treatment to low-income people who are living with HIV. It has been widely supported on a bipartisan basis. But we need a corresponding program to provide PrEP to low-income people who are at risk of HIV. There must be recognition that PrEP it is not just a pill or injection, but provider visits, ongoing lab tests and adherence services. We must also ensure that there is widespread community and provider outreach, particularly in those communities who are not taking advantage of PrEP. Special attention must be paid to the South, where the health care system and Medicaid expansion is lacking while at the same time HIV stigma is high.