Download this factsheet as a PDF

The executive branch of the federal government can often be a confusing space for both new and experienced advocates. Both the ways to participate in the regulatory process and the agencies making decisions about the lives of people living with HIV are complicated, making the process hard to navigate. 

This factsheet will provide a primer on what the executive branch and administrative agencies do, what the main agencies and policies affecting the lives of people living with HIV are, and what steps advocates can take to influence executive agency decision making.

Download this factsheet as a PDF

In this webinar from May 20, 2021, we discussed how to engage in federal administrative advocacy by unpacking:

  • What are the federal agencies and offices, such as PACHA and ONAP, affecting HIV law and policy;
  • the main laws and regulations impacting people living with HIV;
  • and how to get involved and impact the process yourself.

Background: The Executive Branch

The executive branch “executes” the laws: putting what Congress passes into action. This includes enforcement.

The President is the head of the executive branch and the Vice President (VP) is second in command. 

Below the President and VP are the Cabinet officials who serve as advisors to the president and the heads of the 15 main executive (or administrative) agencies. The executive branch is made up of various departments, independent agencies, boards, commissions and committees. 

A few administrative agencies that affect HIV policy are the Department of Health and Human Services which is in charge of the Centers for Disease Prevention and Control and the Health and Human Services Administration, which manages the Ryan White HIV/AIDS Program. 


Rules:

Rules are generally applicable, meaning they apply to everyone, and have a future effect. 

They are designed to implement or interpret law or policy.

Orders:

Orders are final dispositions in any matter other than rule-making and usually affect individual rights or the rights of very small groups. 

They are created by a process called adjudication.

Guidance:

Also called “interpretive rules,” these are intended to help the public understand how a rule applies to them. 

They may explain how an agency interprets a rule or a law, how a rule may apply in a given instance, and what a person or organization must do to comply. 

Guidance cannot set new legal standards or impose new requirements.

HIV and the Executive Branch

Office of National AIDS Policy (ONAP) 

This office has provided overall guidance and coordination of the domestic HIV response. ONAP is situated on the White House Domestic Policy Council, which advises the President on all domestic policy matters. ONAP became defunct under the Trump administration, but was reestablished by the Biden administration in 2021.

Harold Phillips currently serves as director of ONAP.

Department of Health and Human Services (HHS)

Manages HHS’s response to HIV

Funds different programs and activities designed to improve prevention, care, and treatment for racial and ethnic minorities. 

A division of the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP), DHAP focuses on prevention through public health surveillance, scientific research, prevention public education campaigns, programs to prevent and control HIV/AIDS and promoting school-based health and disease prevention among youth.

Formerly known as the HIV/AIDS and Infectious Disease Policy (OHAIDP) before it was combined with the National Vaccine Program Office in April 2019. 

  • Leads project coordination and management of the End the HIV Epidemic initiative (EHE); 
  • Monitors EHE progress; 
  • Delivers information through hiv.gov.

Coordinates HIV/AIDS research across National Institutes of Health (NIH), which provides the largest public investment in HIV/AIDS research globally.

Health Center Program

Grant program in which grants are given to health centers which deliver primary health services to low-income and underserved communities.

Health centers often test for and treat HIV and increase access to PrEP and PEP.

HIV/AIDS Bureau (HAB)

AIDS Drug Assistance Programs (ADAP)

Funds are managed by states and territories, but the programs are intended to provide certain approved medications to low-income people living with HIV who have limited or no health coverage from private insurance, Medicaid, or Medicare.
Funds may also be used to purchase health insurance for clients and for services that enhance access to, adherence to, and monitoring of drug treatments.

Ryan White HIV/AIDS Program

A funded initiative to provide healthcare, treatment, and related services to people living with HIV. Focuses on linking people living with HIV who are either newly diagnosed or are not in care, to the HIV care, treatment, and support services by granting funds to states, cities, counties, and local community-based organizations.

Jurisdictional planning councils are supposed to be comprised of at least 33% people living with HIV and decide how to allocate these resources at the local level.

Centers for Medicare and Medicaid Services (CMS)

Medicaid

Single largest source of health care for U.S. people living with HIV; represents 30% of all federal spending on HIV care. It is the second largest source of public financing for HIV care in the U.S.

Medicare

Federal health insurance program for people age 65 and older and younger adults with permanent disabilities. About ¼ of people living with HIV get their healthcare through Medicare. The primary pathway to get onto Medicare is through Social Security Disability Insurance (SSDI).


Administration for Children and Families (ACF)

Administers Temporary Assistance for Needy Families (TANF), a time-limited program that assists families with children when the parents or other guardians cannot provide for the family’s basic needs.

Department of Housing and Urban Development

Housing Opportunities for Persons with AIDS (HOPWA)

Grants to local communities, states, and nonprofit organizations for projects that provide housing for low-income persons living with HIV/AIDS and their families.

Department of Agriculture 

Supplemental Nutrition Assistance Program (SNAP)

Federal program helping low- and no-income people, those receiving public benefits, the elderly or disabled, or unhoused people purchase food.

Social Security Administration

Supplemental Security Income (SSI)

Financial support for people with disabilities and low income and resources.

Social Security Disability Insurance (SSDI)

Provides benefits for people with disabilities, including HIV.

Department of Justice

Conducts new investigations of HIV/AIDS discrimination under the Barrier-Free Health Care Initiative, the Fair Housing Act, and the Americans with Disabilities Act.

Released the Best Practices Guide to Reform HIV-Specific Criminal Laws to Align with Scientifically Supported Factors in 2014.

The Presidential Advisory Council on HIV/AIDS (PACHA) and the CDC/HRSA Advisory Committee on HIV, Viral Hepatitis and STD Prevention and Treatment (CHAC) are both governed by a charter. 

The charter mandates everything about the advisory body, from who is included on the body (like if people living with HIV must be included) to how many times it meets per year. 

PACHA is rechartered by each new presidential administration. At the time of publication of this fact sheet, President Biden has not yet rechartered PACHA.

Advises HHS on programs, policies, and research on the treatment, prevention, and cure of HIV, including comment and advice on the EHE and HNSP programs.

  • The current PACHA charter specifies a maximum of 25 members who serve for 4-year terms and meet 3 times per fiscal year. There is no requirement that any of these members be people living with HIV.
  • For example, following its last meeting in March 2021, PACHA recommended that HHS eliminate administrative barriers to eligibility and recertification process for services that could be creating and perpetuating systemic racism and to examine additional incentives to encourage states that have not expanded Medicaid to do so, among other things.

Advises HHS, the CDC, and HRSA on objectives, strategies, policies, and priorities for HIV, viral hepatitis, and STD prevention and treatment efforts. 

Comprised of 18 members, at least 4 of which must be people living with HIV, and meets about 2 times per year. As it is currently chartered, members can serve for up to 4 years and can serve for an additional 180 days until their successor takes office. Their terms overlap with one another, so not all members terms will expire at one time. 

For example, CHAC will write letters to the heads of HHS, the CDC, and HRSA, like one it wrote to the Secretary of HHS in June 2020 asking HHS to prioritize young people in the Ending the Epidemic Plan and activities that are known to be linked to prevention of HIV in young people.

An operational plan developed by U.S. Department of Health and Human Services (HHS) agencies which aims to end the HIV epidemic by 2030. 

It focuses on prevention, diagnosis, treatment, and outbreak response. 

Opportunities to influence the implementation of EHE exist at the state & local level, when budgets are being developed, and at PACHA and CHAC meetings.

A road map for ending the HIV epidemic in the United States by 2030. 

The current iteration covers 2021-2025. 

Opportunities to influence the HNSP implementation exist when budgets are being developed, and at PACHA and CHAC meetings.

How Do You Make Changes in Administrative Policies?

Join and/or attend the meeting of state or local working groups (Ryan White, Ending the Epidemic, ADAPs).

Join an advisory body, attend the meetings, and submit comments. 

Join Positive Women’s Network – USA or another network of people living with HIV.



Disrupt by contacting the media or by holding rallies, direct actions, and demonstrations. You can be creative with how you disrupt the process and different actions are better suited for different issues.

How to Write an Effective Comment

  1. Read the rule or at least the summary. 
  2. Outline the questions being asked from the agency and other areas where comment will be useful.
  3. Give yourself time to write, and to review.
  4. Submit comment online by the deadline. 

TIPS:

  • Share personal stories and/or stories of how the proposed rule will impact you and/or your community.
  • Can address all of the proposed rule or only a part.
  • Can be as simple as a sentence or as many pages and points as you want to make.
  • Constructive comments hold more weight. 
  • If you have particular expertise because of your work or life experience, make sure to put that up front.
  • Support your comment with facts and data if you have it; you may be considered an expert, and your opinion matters. 
  • If you can think of an alternative to the rule, include it! 
  • Form letters: Many organizations create form letters – if you don’t personalize them up front or add your opinion, it is not taken as seriously.

Claim Your Seat at the Table: A How-To Guide to Advocacy for People Living with HIV has tons of multimedia resources for advocates, from the newest to the most seasoned, to give you the knowledge, skills, tools and templates, and pro tips you need to make a difference for people living with HIV and our communities.

How to find policies and other agency actions