state advocacy playbook

HIV is a retrovirus that attacks CD4 cells in the immune system. When HIV destroys CD4 cells, the human body struggles to protect itself from a wide variety of infections. Soon after infection, a person may have flu-like symptoms or may have mild symptoms they don’t notice. However, the person will have a very high viral load immediately after infection and will be able to transmit the virus more easily during the early infection phase.

Early detection is key. People with HIV should initiate antiretroviral therapy (ART) as soon as possible after confirming their HIV status to slow disease progression.

Additionally, there are many tools available to prevent HIV. HIV screening, condoms, access to sterile injection equipment, and prescribed medications such as PEP and PrEP can protect people from getting HIV. Sexually transmitted infection (STI) testing is also useful for HIV prevention because having an STI can make a person more susceptible to becoming infected with HIV.

Opportunities

• HIV Screening
• Prophylactic Medications to End the HIV Epidemic
• Viral Suppression

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Despite advances in prevention and treatment, HIV continues to affect the health of many Americans. Each year, more than 30,000 adults receive a diagnosis of HIV⁵. Some regions of the United States, including the Northeast, the South, and U.S. dependent areas, have higher rates of HIV.

HIV does not affect all groups of people equally. Barriers to care and health and a higher prevalence of HIV in some communities affect rates of transmission. Some groups disproportionately affected by HIV include:

• Men who have sex with men (MSM),
• Black/African American men and women,
• Hispanic/Latino men and women,
• Transgender women, and
• People who use injectable drugs.

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In addition to its toll on human health, HIV poses an economic burden. HIV treatment is costly; recent studies suggest that the estimated lifetime cost of care for a person with HIV ranges from the mid-$300,000 to almost $500,000.

In 2018 alone, spending on antiretrovirals reached $22.5 billion in the United States, making HIV antivirals the fifth most expensive therapeutic class.

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With over 70,000 community pharmacies across the United States, expanding care for HIV into pharmacies is a rich opportunity to address gaps.

What Pharmacists Can Do

• HIV Screening: Order and administer HIV screening
• PEP/PrEP: Prescribing and administering of PEP and PrEP in any form, which currently includes oral and long-acting injectable medications.
• Linkage to Care: Rapidly link patients to medical care providers, including infectious disease, primary care, nephrology, and/or other specialties as needed; or to public health departments.
• Medication administration and adherence: Ensure timely dispensing of antiretrovirals and adherence counseling
• Harm reduction services: Distribute sterile injection equipment and naloxone.

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There is great opportunity to expand nationwide access to HIV services through community pharmacies, however existing policies often hinder this potential. With few exceptions, pharmacies and pharmacists:

• Do not have a policy pathway to receive payment for providing HIV prevention and linkage to care services, and
• Are limited to reimbursement only for dispensing HIV-related medications, without opportunity to be reimbursed for providing patient screening, assessment, counseling, referrals, and management services.

Additionally, scope of practice policies vary from state to state, creating a patchwork of policies that may limit pharmacists’ abilities to execute care guidelines.

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Policy leaders and decision-makers can accelerate efforts to end the HIV epidemic, particularly with Medicaid and Medicare populations, by modifying regulations to better serve patients through community pharmacies. To ensure that pharmacists are able to receive payment for delivering and administering HIV prevention and linkage to care services, federal authorities should:

• Authorize pharmacists as providers in Medicare and establish a pathway to cover pharmacist services under Medicare Part B.
• Encourage changes in state Medicaid policy, through state plan amendment waivers, to expand access to community pharmacy-based HIV prevention and linkage to treatment services.

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At the state level, state legislatures and boards of pharmacy and medicine (BOPs and BOMs) establish scope of practice policies that govern the boundaries of pharmacy practice. To understand the state policy landscape and how it will affect efforts to broaden pharmacists’ roles in HIV prevention, it is necessary to understand and consider the following:

• Legislation
• State law
• Statute
• State BOP policies
• Statewide Protocols
• Statewide standing orders
• Collaborative Practice Agreements

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As state leaders craft payment legislation for Medicaid and commercial payors, the following considerations should be addressed.

• State Medicaid
• Commercial Payors
• Payment Parity

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This checklist offers a variety of policy components that can work together to create an enabling environment for the expansion of pharmacist-provided HIV prevention services. By addressing the key barriers of scope of practice, payment/reimbursement, general prevention services, and additional education, policies can help ensure that all patients have access to the essential HIV prevention services they need.

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States have pursued different policy approaches to expanding access to HIV prevention services in their state. Learn more about three state policy models.

• Virginia
• Tennessee
• Idaho

The following checklist outlines key components for successfully launching an effective advocacy effort.

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Understanding the state political landscape is fundamental to the success of advocacy efforts. The political landscape is shaped by the following:

• The current administration,
• State legislator leaders (e.g., committee chairs, vice chairs, or caucus members),
• Legislative priorities,
• Public opinion, and
• Key decision-makers (e.g., community and faith-based leaders).

Keeping up to date on state politics is useful to navigate a path towards expanding access to HIV prevention services in community pharmacies. This includes identifying key “need-to-know” information. By comprehensively assessing the current state of policies related to HIV prevention services and pharmacy practices, stakeholders can pinpoint areas where change is needed and use their understanding of state and local politics to create a solid foundation for accelerating advocacy efforts that will work.

KEY QUESTIONS FOR CONSIDERATION

Effective advocacy is a collaborative effort and is made possible by engaging partners from a wide range of organizations, each with unique expertise, affiliations, and needs related to new policies, to amplify your message. Bringing together patient advocates, pharmacy organizations, legislators, medical societies, and others in your sphere of influence can harness a broad spectrum of perspectives and resources to drive meaningful change.

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Every state and locality is different and requires a tailored advocacy strategy to be most responsive to the political and community environment. A state-level advocacy strategy should be rooted in available data, the engagement of diverse stakeholders, and the policy goal. This step outlines the specific actions and tactics that will drive the advocacy plan forward.

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Partners have unique strengths that can be utilized for more effective advocacy. Understanding each partner’s specific expertise and resources is essential for deploying them in roles where they can have the most significant impact. Tailoring strategies to harness these strengths is key to achieving advocacy goals.

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Stories are critical to advocacy strategy efforts. Data are the foundation of effective stories. It is helpful to collect state-specific data to map and visualize access and service gaps. These types of visualization tools are powerful for illustrating the necessity of expanding access to HIV prevention services and a possible solution for doing so. Providing evidence of where there are service gaps can make a compelling case to policymakers and stakeholders demonstrating where there are opportunities to improve health and economic outcomes.

Communicating a compelling vision is a critical step for establishing effective policy. A cohesive vision can help establish a robust foundation for the policy framework, ensuring it garners support from essential partners and facilitates effective delivery of HIV prevention and linkage to care services in community pharmacies.

TIPS FOR CONSIDERATION

Vital activities to ensure the ongoing success of the advocacy strategy for expanding access to HIV prevention services in community pharmacies include regularly assessing and recognizing progress. Assessments should be conducted at key milestones (e.g., 1 month, 3 months, 6 months, 9 months, and 1 year into the effort). Establish a structured process for checking in with partners on progress, which fosters open communication and collaboration.

Recognition opportunities for achievements, both big and small, should be actively sought, acknowledging the contributions of partners and supporters. This not only celebrates milestones but also strengthens the collaborative spirit, driving the advocacy initiative forward.

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Many people contributed to the development of this State Playbook. We would like to thank the team who worked on the playbook, especially Sara Zeigler and Aliyah Ali, of Courage Forward Strategies, who were responsible for conception, development, research, writing, and review. Additionally, we would like to thank Amy Stone and Kelly Lehman of Amy Stone Scientific and Medical Communications, Inc. for their work researching, writing, and editing the toolkit. Finally, we would like to thank Noelle Esquire with the Elton John AIDS Foundation, Michael Murphy with the American Pharmacist Association, Caroline Juran with the Virginia Board of Pharmacy, John Roccio with CVS Health, and Kayla McFeely and her colleagues at the National Association of Chain Drug Stores for their invaluable feedback. Most of all, we would like to thank the individuals and organizations who will use this Playbook to expand access to HIV prevention and linkage to care services. We are most appreciative of their tireless efforts working towards ending the HIV epidemic in the United States.