HIVMA Key Advocacy Talking Points for Legislators
Updated: May 2019
Engaging with your representatives is important to build support for federal HIV and related public health programs and to educate policymakers on HIV-related issues affecting your community and state. Advocacy can take many forms from meeting with policymakers in Washington DC or in your home district, to calling or emailing their offices to share your position on issues or inviting them to visit your clinic, institution or research program. HIVMA developed the talking points below as a guide for members to use when engaging with their policymakers. Members of Congress are most interested in learning about HIV and other infectious diseases issues affecting their district or state and how federal programs and policies affect their constituents. In communicating with your Members of Congress, focus on the HIV and health policy issues and programs most relevant to your professional area of expertise.
- Ending the HIV Epidemic initiative
- Federal funding for HIV and related public health programs
- Ryan White HIV/AIDS Program
- HIV Research
- Access to health care coverage
- Opioid epidemic
- HIV workforce
- Viral hepatitis
“Ending the HIV Epidemic” Initiative:
- We have the tools to end HIV as an epidemic as recognized by the Trump Administration in their newly launched Ending the HIV Epidemic Initiative. With early and reliable access to HIV medications and comprehensive, patient-centered care like that supported by HRSA’s Ryan White HIV Program, people with HIV can stay healthy by keeping the virus suppressed.
- Treatment has the dual effect of also preventing HIV. When individuals with HIV are virally suppressed they do not transmit the virus.
- A daily pill – referred to as Pre-Exposure Prophylaxis or PrEP – is very effective at preventing HIV in populations at higher risk. Unfortunately, too few people living with or at risk for HIV have access to the medications for prevention or treatment and the health care that they need.
- Access to quality and affordable health care coverage through Medicaid, Medicare and private insurance is critical to bring people at higher risk for HIV and those living with HIV into care and keep them in care. Attempts to reduce coverage, impose restrictions, or create regulation that diminishes access to Medicaid and other health coverage will harm people living with HIV and will set back efforts to End HIV as an epidemic in the U,S.
- Interventions to bolster and grow the HIV healthcare workforce, including targeted loan forgiveness for HIV and ID providers and adequate reimbursement for cognitive care, are urgently needed to ensure an adequate number of healthcare providers to meet the demand for HIV care, particularly in rural and underserved urban areas.
- For FY 2020, support new funding for the “Ending the HIV Epidemic” Initiative:
- $140 million to CDC to scale up HIV testing, implement PrEP programs, and link people newly diagnosed with HIV immediately to HIV care, all of which are critical to identifying those still undiagnosed and keeping them successfully engaged in medical care.
- $70 million to the Ryan White HIV/AIDS Program to bolster capacity of Ryan White-funded clinics to provide expert care to patients newly diagnosed with HIV.
- $50 million HRSA's Bureau of Primary Health Care to fund community health centers to provide PrEP to communities at higher risk of acquiring HIV. CHCs, especially those already funded by the Ryan White Program, are critical entry points for people with limited resources or without other sources for care to get tested and initiate PrEP.
- $25 million to the Indian Health Service to establish an Eliminating HIV and Hepatitis C in Indian Country program to address the HIV and hepatitis disparities in rural areas.
Federal Funding for HIV and related public health programs:
- For FY 2020 funding, support at a minimum the FY 2019 funding levels, plus:
- Increase of $24 million to Part C of the Ryan White program,
- Increase of $95 million to CDC Division of Viral Hepatitis,
- Increase of $70 million to CDC Division of STD Prevention
- Increase of $53 million to CDC for addressing infectious diseases related to the opioid epidemic.
- Increase of $457 million to NIH for Office of AIDS Research activities.
- Increase of $17 million to HUD for the HOPWA program.
- See full funding request chart developed by the AIDS Budget and Appropriations Coalition.
Ryan White HIV/AIDS Program:
- Tell your story: Describe how the Ryan White Program is important to your ability to provide cost effective comprehensive to patients without other sources of coverage and explain how this also benefits public health.
- Talking points:
- HRSA’s Ryan White HIV/AIDS Program is a highly success public health program that provides comprehensive, multi-disciplinary care and improves health outcomes for people living with HIV.
- From 2010 to 2017, viral suppression increased among Ryan White patients from 70 percent to 86 percent, and racial/ethnic, age-based, and regional disparities have decreased. These figures are higher than the national average.
- While 80% of Ryan White clients have some type of health coverage, two-thirds of clients live at or below the federal poverty level, and without this support face barriers to necessary services.
- Most insurance coverage does not key cover services that are important to people living HIV accessing and coordinating services. The Ryan White program fills in these gaps by paying insurance premiums, other cost sharing for health services, medications and case management to provide coverage completion.
- Maintaining access to HIV care and treatment is critical for people with HIV to stay healthy and suppress the level of the virus in their body to undetectable levels. Once detectable their risk of transmitting the virus drops to virtually zero.
HIV Research at the NIH:
- Tell your story: Explain the role of NIH-supported research in advancing HIV prevention, care and treatment and to the development of a cure and/or vaccine. Describe the impact of flat funding or cuts in HIV research funding on efforts to End the HIV Epidemic and to support the next generation of researchers.
- Download and share this fact sheet on HIV research and its cross-cutting benefits to people with HIV and others with life-threatening illnesses.
- Talking Points:
- A decade of flat funding imperils discovery of the next game-changer in HIV research. Key priorities and opportunities include: Developing a vaccine and cure, improving implementation on the ground to better reach key populations, addressing health disparities, expanding prevention options for women, and responding to HIV & aging.
- How does NIH-supported research support the HIV workforce? These funding opportunities play a critical role in attracting and retaining physicians in infectious diseases and HIV. Without sustained funding, we will not have a new generation of infectious diseases and HIV researchers to continue to advance the field. Restricting research opportunities now will have a long-term impact on our country’s ability to prevent and treat deadly infections by limiting research discoveries and eroding infectious diseases workforce capacity.
Access to health care coverage:
- Tell your story: Explain how increased access to health care through Medicaid expansion and/or insurance marketplaces has improved the health outcomes of your patients.
- Talking Points:
- Protect access to affordable, high-quality and comprehensive health insurance and reject any renewed attempts to repeal the Affordable Care Act or undermine the federal commitment to the Medicaid program.
- Effective treatment improves not only individual health but also eliminates transmission of HIV to others, an important strategy to end the HIV epidemic.
- Prior to the Affordable Care Act, many people living with HIV were denied healthcare coverage or it was unaffordable. In most states, people with HIV did not qualify for Medicaid coverage until they became sick and disabled by AIDS.
- Tell your story: Explain how the opioid epidemic has impacted your clinic, your practice, the needs of your patients, and innovative ways that you bring people into care.
- CDC estimates that more than 220 counties in the U.S. are at risk for HIV outbreaks linked to injection drug use. A fully comprehensive response to the opioid epidemic addresses overdose mortality in addition to substance use and addiction treatment, mental health services, and prevention and treatment of opioid-related complications like infectious diseases.
- Expanding access to all effective prevention interventions, including syringe service programs (SSPs), safe consumption sites, and comprehensive HIV, viral hepatitis and STI screening is important to reduce the spread of HIV and other infections among injection drug users. Allow the use of federal funding to purchase syringe and other equipment necessary for SSPs.
- We need better surveillance that improves detection and response to injection-related infections. Additional funding is necessary for local public health departments to improve surveillance and identify communities at risk, ensure those at risk get tested and diagnosed with HIV, viral hepatitis, endocarditis, and other infections are connected with treatment resources.
- Additional resources are needed to build medical workforce capacity to directly address opioid-related infectious diseases. Expanding access to loan forgiveness for health care providers including HIV and ID providers caring for individuals with opioid use disorders and other substance use disorders is needed to respond to outbreaks and significant increases in HIV, hepatitis C, and other infectious disease linked to injection drug use.
- Fund the $25 million authorized by the SUPPORT Act to implement Act’s Loan Repayment for Substance Use Treatment Disorder Treatment Workforce Program.
HIV Medical Workforce:
- Tell your story: Explain why you became an HIV clinician or researcher, and the barriers to a well-trained and compensated workforce.
- Who is the HIV medical workforce? ID-trained physicians are the largest specialty represented among HIV medical providers representing 60% of the workforce. Internists, family medicine and other specialists also are critical to the HIV workforce. Physician assistants and nurse practitioners play an increasingly important role providing care to people living with HIV.
- Despite a growing number of people living with HIV, a CDC study predicted a serious shortfall in the HIV workforce relative to demand beginning this year, in 2019. HIV workforce challenges are compounded by a decline in physicians entering infectious training programs in part due the high medical school debt coupled with low compensation for ID and HIV physicians relative to other specialties. high debt burden from medical school.
- Current reimbursement methodologies undervalue cognitive care relative to procedural-based care. A re-evaluation of reimbursement methodologies for evaluation and management services is needed along with targeted loan forgiveness for ID/HIV medical providers working with underserved patient populations, including those affected by HCV, HIV and the opioid epidemic.
- Tell your patients’ story:
- Why does Medicaid matter for people living with HIV?
- Download and share this infographic on Medicaid’s role for people with HIV.
- Maintaining the federal commitment to the Medicaid program is critical to the more than 44% of people living with HIV in care who count on the program for their healthcare coverage.
- Prior to the Medicaid expansion many people with HIV were not eligible for Medicaid coverage until they were sick and disabled by AIDS, no matter how poor they were.
- Efforts to diminish access to Medicaid, such as allowing work requirements or proposing block grants and per capita caps on beneficiaries, would decrease the number of people living with HIV in care and on treatment.
- Most Medicaid beneficiaries who are able to engage in some form of work, attend school or care for a family member. Even with exceptions many of people who may be exempt from work requirements are likely to fall through the cracks due to administrative errors or challenges navigating the bureaucracy.
- People with HIV depend on Medicaid and access to healthcare in order to stay healthy and to be able to work. Jeopardizing their coverage is counterproductive and will cost more over the long-term.
- Download and share this infographic showing the national burden of STDs. You can also create our own state-specific infographic with CDC’s resources here.
- There is an urgent need to mount a much more aggressive response to the unprecedented rise in rates of STD cases across the country. The CDC reports that in 2017, there were 1.7 million cases of chlamydia, 555,000 new cases of gonorrhea, and over 30,000 cases of primary and secondary syphilis.
- Responding to the STD crisis should be a national public health priority. We will not be able to stop the spread of STDs and enhance our response to serious threats such as drug-resistant gonorrhea without investing in a maintaining a robust public health system throughout the country, including a significant increase in funding for STD prevention at the CDC. .
- Support an FY 2020 budget request for a $70 million increase in STD funding to provide a jump-start for state and local health departments. Federal funding for State and local public health infrastructure and personnel is insufficient to allow for the necessary follow-up and partner services for the more than two million new STD cases, including HIV, that are reported annually.
- Download and share this fact sheet on the intersection of HIV and viral hepatitis.
- Between 2010 and 2016 there was a 3.5-fold increase in in new hepatitis C infections, predominantly driven by increases among young white adults in rural areas with a history of injection drug use following use of oral prescription opioids
- What does viral hepatitis have to do with HIV? About a quarter of all people living with HIV are co-infected with hepatitis C. Because CDC is so under-resourced in the Division of Viral Hepatitis, a lack of effective surveillance, screening, and other prevention activities have hampered our ability to successfully address viral hepatitis and co-infection with HIV.
- There is a cure for the hepatitis C virus, but too few have access to it. High drug prices and harmful health insurer policies are restricting access to this curative treatment. Arbitrary coverage restrictions, such as requiring that a specialist provider be the treatment prescriber and requiring a period of abstinence from drugs or alcohol prior to treatment, are not supported by the latest science or treatment standards. Expanding access to hepatitis C treatment is important to prevent disease progression and death in individuals living with the hepatitis C virus and to stop transmission. By limited access to treatment, we won’t be able to reverse current trends or prevent large-scale outbreaks.