Together TakeMeHome: One Year of Progress, Challenges Ahead
A newly published report from the Centers for Disease Control & Prevention (CDC) offers promising initial results from the first year of Together TakeMeHome (TTMH), a groundbreaking program that provides free HIV self-tests by mail to people across the U.S., including Puerto Rico, making it the largest HIV self-testing program in the nation's history. This direct-to-consumer approach aims to address persistent gaps in HIV testing coverage and reach those who have not engaged with traditional testing services, particularly within priority populations disproportionately affected by HIV.
The report reveals that TTMH has already exceeded expectations, distributing 443,813 tests to 219,360 people in its first year, far surpassing its initial goal of distributing 200,000 tests annually. Significantly, 24.1% of TTMH users reported never having previously received HIV testing, demonstrating the program's success in reaching those who may face barriers to traditional testing methods. This success builds upon the growing recognition of HIV self-testing (HIVST) as a valuable tool in the global effort to increase testing rates and achieve earlier diagnoses. The World Health Organization recommends HIVST as an additional approach to HIV testing services, recognizing its potential to overcome common barriers such as stigma, privacy concerns, cost, and lack of access to clinics.
Successes of TTMH and the Benefits of HIVST
The initial data from TTMH not only highlights the program's impressive reach but also provides valuable insights into its effectiveness in engaging priority populations and identifying new diagnoses. The report shows that 67.9% of TTMH users identify as members of groups disproportionately affected by HIV, including gay and bisexual men, Black women, and transgender women. This targeted reach is particularly important given that these communities often face greater barriers to accessing traditional testing services. Furthermore, the program's success in utilizing dating apps as a primary outreach platform, with nearly 70% of orders originating from these sources, demonstrates its ability to connect with people in online spaces where they feel comfortable. While comprehensive data on new HIV diagnoses among all TTMH users is not yet available, initial findings suggest that the program is successfully identifying people who are unaware of their HIV status. Among a subset of participants who completed a follow-up survey and had not previously reported an HIV diagnosis, 1.9% received a reactive result on their self-test.
These promising results are consistent with the broader benefits of HIVST demonstrated by research on other programs. For example, the eSTAMP study, a randomized clinical trial published in JAMA Internal Medicine, found that participants who received HIV self-tests were significantly more likely to test for HIV at least three times during the trial compared to a control group. Significantly, eSTAMP participants reported 34 newly identified transmissions among members of their social networks who used the study self-tests, highlighting the potential for HIVST to extend its reach beyond the initial user. The TakeMeHome program demonstrated that HIVST can be delivered at a reasonable cost, identifying 18 confirmed new HIV diagnoses in its first year at a cost of $9440 per diagnosis. This cost falls within the range of $3500 to $36,300 per diagnosis reported for traditional HIV testing methods implemented in various healthcare and non-healthcare settings. Moreover, research on the eSTAMP trial, a similar HIVST program, suggests that such programs can be cost-saving in the long run due to their potential to avert new transmissions and reduce lifetime HIV treatment costs. A scoping review published in Patient Preference and Adherence further supports the value of HIVST, finding that it is generally preferred over traditional testing methods due to its convenience, privacy, and the control it affords users.
One of the most significant advantages of HIVST is its ability to combat stigma, a persistent barrier to HIV testing. As noted in the Journal of Public Health Management and Practice, "Many men who have sex with men (MSM) prefer to test for HIV in privacy rather than at clinical settings or testing sites." This preference for privacy is particularly relevant for marginalized communities who may face discrimination or judgment in traditional healthcare settings. HIVST empowers people to learn their status in a safe and confidential environment. The HIV.gov blog succinctly captures this empowerment, stating that "HIV self-testing enables a person to learn their HIV status by placing control directly into the hands of users. With HIV self-tests, people can discreetly and conveniently test themselves in private, bypassing the potential discomfort or discrimination they might face in traditional settings."
Addressing the Needs of Diverse Populations
While promising, TTMH and other HIVST programs must acknowledge that HIV does not affect all communities equally. Disparities in HIV testing rates and outcomes persist, requiring tailored strategies to ensure equitable access to HIVST. For example, testing rates vary across racial and ethnic groups, with Asian people and Native Hawaiian and Pacific Islanders reporting lower rates than some other communities of color.
People who inject drugs (PWID) and those in rural communities face unique barriers to HIV testing. Research suggests that while PWID are willing to utilize at-home testing, structural barriers, such as stigma and limited access to healthcare, result in lower test completion rates. Similarly, rural communities often lack sufficient HIV prevention and testing infrastructure, and residents may face transportation challenges. To address these issues, we must partner with relevant organizations, offer alternative delivery methods, provide clear instructions and support, increase funding for rural programs, and collaborate with rural providers to promote HIVST.
Furthermore, recognizing the intersections of race/ethnicity, gender identity, and immigration status is crucial. Black and Hispanic immigrants face lower testing rates than their U.S.-born counterparts, even with known risk factors. Fear of deportation, fueled by policies like the "public charge" rule, can deter Latinx immigrants from seeking testing. Undocumented African immigrants face similar challenges, compounded by HIV-related stigma within their communities. HIVST programs must partner with organizations serving these populations, provide clear information about confidentiality and its separation from immigration enforcement, and offer culturally appropriate support.
Transgender people, especially transgender women of color, experience disproportionately high rates of HIV. HIVST can offer a more private and affirming option, but programs must be trans-inclusive and address anticipated stigma, which can be a significant barrier to testing. Similarly, people engaged in sex work often face stigma and marginalization, hindering access to healthcare. Outreach efforts should prioritize building trust, ensuring confidentiality, and partnering with organizations that serve this population.
Addressing the unique needs of diverse populations is essential for HIVST programs to achieve health equity and ensure that everyone has the tools they need to know their status and engage in appropriate care and prevention.
Strengthening Linkage to Care
While HIVST programs like TTMH are effective in expanding access to testing and identifying new diagnoses, their true impact hinges on ensuring that people who test reactive are seamlessly connected to appropriate care and support services. As highlighted in my previous blog post, there is a significant gap in linkage to care following HIVST. This gap is concerning, as timely linkage to care is essential for initiating treatment, improving health outcomes, and reducing the risk of onward transmission.
Unfortunately, we lack specific data on linkage to care outcomes for the TTMH program. However, the program website does provide information on the resources available to users who test reactive. These resources include referrals to local testing sites for confirmatory testing, contact information for HIV care providers, and links to support services. While these resources are valuable, they may not be sufficient to ensure that all people who test reactive are successfully linked to care.
To strengthen linkage to care for TTMH and other HIVST programs, we need a more robust and proactive approach. This includes implementing strategies such as:
Telehealth Follow-Up: Offering telehealth consultations for post-test counseling, linkage to care, and ongoing support can help address logistical barriers and provide immediate access to guidance.
Partnerships with Local Providers: Establishing formal partnerships with HIV testing sites, clinics, and community-based organizations can streamline referrals and ensure that people have a clear pathway to care.
Peer Navigation: Utilizing peer navigators who have lived experience with HIV can provide invaluable support and guidance to people navigating the complexities of the care system. Peer navigators can offer emotional support, assist with appointment scheduling, and help address any barriers to accessing care.
Data Collection and Monitoring: Implementing comprehensive data collection and monitoring systems to track linkage to care outcomes is essential for identifying gaps and areas for improvement. This data can help programs tailor their services to better meet the needs of their users.
By investing in these strategies, we can bridge the gap in linkage to care after HIVST and ensure that everyone who tests reactive receives the timely and comprehensive care they deserve.
Policy Enhancements
The successes of the TTMH program underscore the transformative potential of HIVST to expand access to testing, reach those who have traditionally been left behind, and combat stigma. To fully realize this potential and solidify HIVST as a cornerstone of the Ending the HIV Epidemic (EHE) initiative, we must advocate for policies that support its long-term sustainability, equitable reach, and seamless integration with other health services. This includes:
Increased Funding: Sustained and increased funding for TTMH and similar HIVST programs is paramount to ensuring their continued operation, expansion, and ability to reach diverse communities.
Targeted Outreach: Developing and implementing tailored outreach strategies for PWID, rural communities, BIPOC, and other marginalized groups, is essential for addressing the unique barriers they face and promoting equitable access to HIVST.
Public Awareness Campaigns: Comprehensive public awareness campaigns are needed to promote HIVST, address stigma surrounding HIV testing and status, and educate the public on the importance of knowing their HIV status.
Integration with Other Services: Integrating HIVST with other health services, such as STI testing and treatment, PrEP, and primary care, can create a more holistic and patient-centered approach to sexual health, facilitating access to a broader range of prevention and care services.
The EHE initiative, launched in 2019, aims to reduce new HIV transmissions in the U.S. by 90% by 2030. HIV testing is a critical first step in achieving this goal. As the CDC aptly states, "The COVID-19 pandemic has shown how critical HIV self-testing services are to sustaining momentum to end the HIV epidemic." TTMH has demonstrated that HIVST can effectively reach those who have not engaged with traditional testing services, combat stigma, and identify new diagnoses.
We must continue to advocate for policies and programs that support HIVST and ensure that everyone, regardless of their background or circumstances, has access to convenient, confidential, and empowering testing options. Together, we can make HIV testing a routine part of healthcare, reduce new transmissions, and move closer to ending the HIV epidemic in the U.S.
Integrating HIV Treatment with Gender-Affirming Care
In our pursuit of health equity, it's critical to focus on the specific needs of transgender people living with HIV, particularly regarding the safe and effective use of antiretroviral therapy (ART) alongside gender-affirming hormone therapy (GAHT). A groundbreaking study conducted by Thomas Jefferson University and the National Institutes of Health (NIH) has significantly advanced our understanding of ART with GAHT for transgender people, specifically women, living with HIV. This research, a direct response to the previously identified gaps in knowledge, offers concrete evidence on the safety of such co-administration, marking a shift in how healthcare providers can approach treatment plans for their transgender patients.
Until now, the apprehension to combine ART and GAHT has led a significant portion of the community to modify their treatment regimens due to fears of adverse interactions. A 2017 study in LGBT Health reveals the depth of this issue, noting that among study participants 40% reported not taking ART (12%), GAHT (12%), or both (16%) as directed due to drug-drug interaction (DDI) concerns. The recent study, published in Clinical and Translational Science, directly addresses these concerns by analyzing the pharmacokinetic interactions of doravirine, tenofovir (key components of ART), and estradiol (a common estrogen used in GAHT). The findings reveal that these medications, when used together, do not significantly impact each other's effectiveness, providing a much-needed evidence base to support the concurrent use of ART and GAHT.
For transgender women living with HIV, the integration of ART and GAHT is essential not only for managing their HIV status but also for affirming their gender identity. This aspect of their healthcare journey underscores the need for clear, evidence-based guidelines that address the co-administration of these treatments without compromising their efficacy or safety. The recent study's findings mark a significant advancement in our understanding, challenging previous assumptions about potential DDIs.
Safety of Co-administration
The study, "Bidirectional pharmacokinetics of doravirine, tenofovir, and feminizing hormones in transgender women (IDentify): A randomized crossover trial," examines the pharmacokinetic parameters—essentially, how the body absorbs, distributes, metabolizes, and excretes a drug—of doravirine and tenofovir (two key antiretroviral medications) when administered alongside estradiol, a common estrogen used in GAHT.
The findings are significant: the co-administration of these ART medications with estradiol does not significantly alter the effectiveness of each drug. Specifically, the study observed that the levels of doravirine, tenofovir, and estradiol remained stable when used together, indicating that these medications can be safely combined without diminishing their ability to treat HIV or support gender transition.
This research addresses a critical gap in healthcare for transgender women living with HIV, who have historically faced uncertainty about combining ART with GAHT. By demonstrating that these medications do not interfere with one another to a clinically significant degree, the study reassures patients and healthcare providers alike that pursuing both HIV treatment and gender affirmation simultaneously is both safe and viable.
Furthermore, this study lays the groundwork for more informed healthcare practices. It underscores the importance of considering the unique needs of transgender people in HIV treatment plans and encourages ongoing research to explore the interactions between various ART and GAHT regimens. Ultimately, this evidence supports the development of comprehensive care models that fully address the health and well-being of transgender women living with HIV, ensuring they receive effective, affirming care without compromise.
Advancing Guidelines and Communication for Integrated Care
For providers, this new data addresses the concerns expressed in a prior literature review in the Journal of the International AIDS Society, which noted the "insufficient data to address DDIs between ART and feminizing hormone regimens." Now, with fresh insights available, the emphasis can shift to using this updated information to craft and apply comprehensive guidelines and to kickstart education campaigns for providers and the community that align with these new findings.
The urgency now is to convert this research into practical, accessible guidelines that assist healthcare providers and transgender women in navigating the safe use of ART alongside GAHT. It's critical to update healthcare providers with the latest evidence, ensuring they are well-equipped to guide their patients through informed treatment choices. This means integrating new research findings into professional development programs and encouraging open, knowledgeable conversations between healthcare professionals and their patients about the combined use of these treatments.
Expanding the Scope: Inclusive Research for Transgender Men and Non-Binary People
While significant strides have been made in understanding the co-administration of antiretroviral therapy (ART) and gender-affirming hormone therapy (GAHT) for transgender women, our knowledge remains limited when it comes to transgender men and non-binary people living with HIV and seeking gender affirming care. With the completion of this major study by Thomas Jefferson University and the NIH, the next step is to expand our research efforts to encompass the full spectrum of transgender experiences, ensuring that future studies are as inclusive and comprehensive as possible.
Transgender men and non-binary people face unique healthcare challenges that are often overlooked in medical research. This oversight not only perpetuates health disparities but also leaves significant gaps in our understanding of how ART interacts with testosterone and other aspects of gender-affirming care utilized by transgender men and non-binary people. To ensure that all members of the transgender community receive comprehensive and affirming care, it is imperative that future studies specifically investigate these interactions.
The call for research extends beyond the pharmacokinetic interactions to encompass the physiological, psychological, and social outcomes of combining HIV treatment with gender-affirming care across all gender identities. Such studies should aim to provide a holistic understanding of treatment efficacy, safety, and the overall well-being of gender diverse patients, regardless of their specific gender identity or the nature of their gender-affirming treatments.
By advocating for and conducting research that includes transgender men and non-binary people, we can move towards a healthcare model that truly embraces diversity and inclusivity. This approach not only enriches our collective knowledge but also ensures that healthcare practices and guidelines are reflective of the needs of the entire transgender community. It is through this comprehensive understanding that we can improve care, enhance treatment adherence, and ultimately support the health and well-being of all transgender people living with HIV.
Mobilizing for Inclusive Healthcare Reform
The recent advancements in understanding the co-administration of antiretroviral therapy (ART) and gender-affirming hormone therapy (GAHT) represent a significant step forward. However, the journey towards fully supporting the health and well-being of all transgender people living with HIV continues. We must intensify our efforts in advocacy, education, and policy reform to ensure equitable treatment for everyone. Here's how different stakeholders can contribute:
For Healthcare Providers:
Educate Yourself: Actively seek out and participate in continuing medical education (CME) opportunities focused on the latest research in ART and GAHT co-administration. Utilize resources from reputable organizations such as the World Professional Association for Transgender Health (WPATH) and the Centers for Disease Control and Prevention (CDC).
Practice Inclusive Care: Implement guidelines and practices in your clinical setting that respect and address the unique needs of transgender patients. Ensure that your staff is trained in cultural competency regarding transgender health issues.
For Researchers:
Fill the Research Gaps: Prioritize studies that explore the long-term health implications of ART and GAHT co-administration, especially for underrepresented groups within the transgender community, such as transgender men and non-binary people.
Collaborate with the Community: Engage with transgender communities to ensure that research is inclusive, relevant, and respectful. Consider community-based participatory research (CBPR) approaches to involve community members in the research process.
For Policymakers:
Develop Evidence-Based Guidelines: Work with medical experts and advocates to create and enforce guidelines that facilitate the safe co-administration of HIV medications and gender-affirming therapies. These guidelines should be based on the latest research and best practices.
Support Access to Care: Advocate for policies that remove barriers to accessing both HIV treatment and gender-affirming care. This includes ensuring coverage by insurance providers and addressing legal and systemic obstacles that transgender people face.
For Advocates and Community Leaders:
Raise Awareness: Use your platforms to disseminate accurate information about the safety and importance of integrating ART with GAHT. Highlight stories and data that underscore the positive impact of affirming care.
Mobilize Support: Organize campaigns to advocate for improved healthcare policies, increased research funding, and greater awareness of transgender health needs. Collaborate with healthcare providers, researchers, and policymakers to amplify your efforts.
Together, we can bridge the gaps in care and knowledge, creating a future where every transgender person living with HIV has access to the treatments they need, free from stigma and barriers. Let's commit to a healthcare environment that celebrates diversity, champions inclusivity, and ensures comprehensive care for all.
HIV Advocates Gather in Nashville for Health Fireside Chat
From April 27th through 29th, ADAP Advocacy Association (aaa+) hosted its first Health Fireside Chat of the year. The series was rebranded to encompass a broader focus on public health, changing from the HIV/AIDS Fireside Chat to the Health Fireside Chat. Unlike previous Fireside Chats, Nashville’s event added an “ice breaker” activity, themed in light of the hosting city – a line dancing lesson, as well as a town hall meeting convened in partnership with Positively Aware. The additional half day of activities - including the ice breaker, townhall meeting, and meet and greet - allowed attendees to settle into conversation expediently after having a solid hour of good laughs, encouragement, and bonding. Once down to business, policy discussions focused on Tennessee’s politically-motivated decision to decline HIV prevention funding, reforming the 340B Drug Discount Program to better meet patient needs, and the intersection between U=U (undetectable equals untransmittable) and reforming HIV criminalization laws.
The townhall meeting, which was facilitated by Rick Guasco, Acting Editor-in-Chief of Positively Aware, started with recognition that Nashville was explicitly chosen as a hosting city due to the state of Tennessee’s rejection of federal HIV prevention dollars. While a later discussion was specific to that issue, the town hall dug into underlying (and broader) concerns around systemic discrimination as a driver of today’s HIV epidemic. Digging into how racism, as an example, manifests can be a touchy subject in any group, even among those who generally align. Such a charged set of topics, especially among HIV’s thought-leadership, can and does lead to transformational moments, particularly because creating a space of “internal” advocacy provides a chance for us to experience, and navigate, conflict amongst ourselves. That conflict and navigation also provides us a chance to grow together and to break down silos of interest, work, and thought. And this townhall did exactly that.
The first policy session, “Tension in Tennessee: Is an HIV Access to Care & Treatment Crisis Looming?”, lead by the O’Neill Institute’s Jeff Crowley, invited local advocates to discuss their internal view of Tennessee’s “troubles” with some national advocacy representation. While much of the discussion focused on the details of local communication and national assumptions, some discussion on how the state may implement its newly allocated funding (will the state’s budget continue to fund prevention efforts next year?), much of the conversation that followed was explicitly about how local advocates can communicate and collaborate with national advocacy efforts. What became clear from that conversation is much of the national and state level advocacy we tend to reflect fondly of when speaking on decades past is relatively fragile and not well-coordinated. Planning bodies have diminished to largely being provider groups and some don’t even meet – despite a statutory requirement to do exist. An attendee with capacity building expertise pointed out the need for investment in this space. Many planning bodies have been weakened by atrophy, others have faced a demographic shift (and as a result a change in the barriers and assistance needed in order to appropriately activate affected community). The discussion as a whole highlighted the extreme silos working against a cohesive and collaborative advocacy network necessary to support ending the HIV epidemic.
340B remains an important issue for HIV advocates. As such, “340B Drug Discount Program: The Issues Spurring Discussion, Stakeholder Stances, and Possible Resolutions?“ was the focus of the second policy session. Some of the advocates in attendance knew little about the program, so the discussion provided an excellent educational opportunity on how the discount drug program works. Laser focused on issues of health equity, Kassy Perry of Perry Communications Group lead the group to dig in – and quickly. Advocates less familiar with 340B were readily able to identify the need for reform when assessing reductions in charity care and increases in medical debt. The group readily recognized 340B as a powerful tool toward addressing health disparities, especially economic consequences for patients, and where those consequences can and do negatively impact entire areas of patients’ lives. Attendees from industry partners listened intently as advocates described their concerns and the need for the program to better reflect the intent in which it was established.
Day two concluded with attendees enjoying a meal with one another, and a round of singing “happy birthday” to Brandon M. Macsata, the ADAP Advocacy Association’s CEO, who turned 50. This was truly a moment (many of them really) in which attendees got to buy into my desire to ensure our colleague felt loved and celebrated, since we were all together. All told, it is very likely Brandon heard the song “happy birthday” some two dozen times or more throughout the event (and I sincerely encourage ya’ll to do so again, if you find yourself in a meeting with him during the month of May).
The final policy session, “U=U: Is 'Undetectable Equals Untransmittable' Changing the Landscape for HIV Criminalization Laws?“, focused on the intersection of issues between U=U and reforming HIV Criminalization Laws with the conversation hosted by Mandisa Moore-O’Neal, executive director of the Center for HIV Law and Policy, and Murray Penner, executive director of U=U Plus. Mandisa shared with the group the exceptional nature of HIV criminalization laws, but also how general criminal codes are out of date, furthering the HIV epidemic, and nearly exclusively used against Black and Brown people living with HIV. Mandisa also discussed how these laws can and are leveraged to further domestic violence (and coercive control). Murray then discussed how laws which allow for “affirmative defenses” only help those people living with HIV which can readily access and maintain care. All of which emphasized that the design of these laws assume that because someone is living with HIV, they are necessarily presumed “guilty”. Advocates discussed how to break silos, including the potential to partner in prosecutor and public defender education efforts. Advocates focused on health or with strong relationships with their local health departments, for example, might wish to participate in education efforts alongside legal advocacy organizations or a state Bar.
The Health Fireside Chat series remain an exceptional retreat to advance thought-leadership, deep-dive policy conversations, as well as often-under appreciated advocacy collaboration. The ADAP Advocacy Association plans to host additional Health Fireside Chats later this year in Philadelphia, PA, and New Orleans, LA.
The Time Has Come to Centralize HIV Services in West Virginia
My name is Marcus J. Hopkins, and I have been living with HIV since 2005. While I’m not considered a “long-term survivor” of HIV—a term deservedly ascribed to People Living with HIV/AIDS (PLWHA) since the 1980s or 1990s—my experiences receiving treatment for HIV through the Ryan White HIV/AIDS Program (RWHAP) and AIDS Drug Assistance Program (ADAP) have run an interesting gamut across five states: Georgia, Florida, Tennessee, California, and West Virginia. Across those five states, I have experienced a wide variety of HIV services provision over the course of being in HIV treatment since 2007, and can truly attest to the adage, “When you’ve seen one ADAP, you’ve seen one ADAP.”
Over the course of sixteen years of receiving services through the RWHAP and ADAP programs, several things have changed:
Providers no longer wait until a patient receives an AIDS diagnosis to initiate HIV Antiretroviral Therapy (ART)
Treatment regimens have largely transformed from multi-pill regimens to single-pill regimens and even long-term injections requiring once monthly or every other month injections
The emergence of Pre-Exposure Prophylaxis (PrEP)—a once-daily pill or once-monthly or every other month injection to prevent the transmission of HIV between serodiscordant sex partners—means that the possibility of no new diagnoses is a distinct possibility within our lifetimes
The threat of waiting lists to receive treatment and services is largely a thing of the past
The passage of the Affordable Care Act (ACA, or “Obamacare”) allowed state ADAP programs to pay the premiums and co-pays for private insurance for eligible clients
The passage of the ACA also allowed states to expand Medicaid in such a way that PLWHA are now automatically covered by state Medicaid programs, rather than ADAP. To date, 39 states have expanded their Medicaid programs (Kaiser Family Foundation, 2022)
And yet, despite all of these advancements, issues remain, particularly in rural parts of the country where even basic medical services are limited, much less HIV-specific services. Such is the case for my home state of West Virginia.
Since returning to West Virginia from Los Angeles in 2013, my experience with this state’s HIV services has been…fraught, at best. I can’t complain about the quality of care I’ve received, here; I can say that qualifying and recertifying for the various RWHAP parts is made extremely cumbersome.
You see, in the state of West Virginia, there is one organization that handles Ryan White Part B (basically, the ADAP program) for the entirety of the state. This entity is separate from the clinics that provide Part C and Part D services (outpatient care and the provision of medical care and support services for low-income women, children, and youths with HIV and their families, respectively). And THOSE entities are entirely separate from the Part F services, which cover education, HIV treatment projects, dental programs, and the Minority AIDS Initiative. And even THOSE entities are entirely separate from the ones that provide services for the Housing Opportunities for People with AIDS (HOPWA) program that provides various housing and utility assistance services for PLWHA.
So, let’s do a quick recap: in order to receive the full breadth of services to which most PLWHA are eligible in the state of West Virginia, one must engage with at least four separate entities. This doesn’t even address nutrition assistance, non-emergency medical transportation for visits, and other supportive services.
This is a problem.
It is a problem for patients; it a problem for providers; it is a problem for the HIV Care Continuum (United States Department of Health and Human Services, 2021); it is a problem for HIV surveillance and prevention.
As far as I can tell, this problem seems kind of unique to West Virginia. West Virginia never saw the proliferation of AIDS Service Organizations (ASOs) that most of the rest of the country saw during the 1990s and early-2000s. While the rest of the country and especially surrounding states saw an influx of new 501(c)(3) non-profit organizations and clinics step in to provide the wide swath of HIV case management, clinical, behavioral health, and supportive services, West Virginia’s services developed in inefficient siloes that left patients scrambling to figure out the veritable pantheon of providers necessary to get the services for which they are eligible.
By comparison, in the northeastern region of the state of Tennessee (still deep in Appalachia), Ryan White caseworkers went out of their way to assist with every aspect of HIV care, from enrollment in the program to clinical services to mental health services to dental services to HOPWA services to enrolling in nutrition assistance programs—they did it all. The same was true of my experiences in California and Florida.
In West Virginia, however, every aspect of seeking and qualifying for HIV services requires patients to perform an intricate and ever-changing ballet, the steps for which they are never taught. Because there are so few providers of these services, when patients experience issues, there aren’t really any other avenues to turn to for assistance.
This has become the case with one of West Virginia’s terribly mismanaged HOPWA grantees.
Again, unlike virtually every other state in the U.S., HOPWA services in West Virginia are not seated within the HIV treatment and services infrastructure, insufficient as it is, but within various organizations dealing with homelessness, such as Covenant House and the West Virginia Coalition to End Homelessness. Comparatively, in other states, referral to and enrollment in the HOPWA program is handled by ASOs, who work in concert with state housing agencies to assist with housing issues.
Over the course of the past few years, when one of West Virginia’s HOPWA service providers stopped paying housing and utility payments in a timely manner, patients had nowhere to turn without having to go through multiple channels to resolve their issues…but not even really resolve them; just lodge a complaint. Those HOPWA clients would have had to complain, first, to the very agency that failed to return their panicked calls, as they lost their housing or their electricity was cut off; instead, they had to jump through several different hoops just to find out where to go to complain—the regional office in Pittsburgh, PA, which initiated an investigation which, frankly, doesn’t do anything for those who are trying to get their rent paid or their electricity reconnected.
The time has come for the formation of not one, but several ASOs in the state of West Virginia to centralize these services. It is unconscionable that a state with a burgeoning HIV infection rate should have such a disorganized and disjointed service provision landscape. The time has come to centralize services at these ASOs, lest we continue to beat numerous dead horses and fail to serve those living with HIV.
Sources:
Kaiser Family Foundation. (2022, April 26). Status of State Medicaid Expansion Decisions: Interactive Map. Washington, DC: Kaiser Family Foundation: Medicaid. https://www.kff.org/medicaid/issue-brief/status-of-state-medicaid-expansion-decisions-interactive-map/
United States Department of Health and Human Services. (2021, June 21). What Is the HIV Care Continuum? Washington, DC: United States Department of Health and Human Services: HIV [dot] gov: Federal Response: Policies & Issues. https://www.hiv.gov/federal-response/policies-issues/hiv-aids-care-continuum
ADAP Advocacy Association Resumes Fireside Chat Retreats
The Community Access National Network (CANN) celebrated the return of ADAP Advocacy Association’s (aaa+) “Fireside Chat” retreats after a two and a half years pause, due to the COVID-19 pandemic. CANN has regularly participated in the Fireside Chats since their inception and enjoys a robust partnership with our sister organization aaa+. The event, held in Wilmington, NC, featured 23 stakeholders, including patients, advocates, and manufacturer representatives and discussed the issues of “utilization management”, the status of Ending the HIV Epidemic (EHE) plans and activities in the South, and the overall impact of the COVID-19 pandemic on public health.
Recognizing current COVID-19 transmission and community level trends, aaa+ developed a robust self-administered testing protocol, wherein participants tested prior to travel, upon arrival, and after returning to their home areas. aaa+ provided rapid self-test kits to each of the attendees. The idea here is important to note, in part, because a chain of transmission was indeed interrupted when one planned attendee reported a reactive test result from their test upon arrival, despite having had a nonreactive test result from their pre-travel test the day before. As a result, the person affected did not actually attend any sessions and appropriately self-isolated. Other attendees expressed gratitude for the reduction of risk, respect of their health and the health of attendee household members, and wished the person affected a speedy recovery. Truly, gathering safely can be done and done well, as demonstrated by aaa+’s efforts here.
Prevention Access Campaign’s United States Executive Director, Murray Penner, presented the issue of payer “utilization management” affecting people living with HIV and AIDS (PLWHA), with respect to broad issues of health care and specific to AIDS Drug Assistance Programs (ADAPs). Opening commentary reminded the audience that utilization management practices affecting health other than HIV also affects access to care for PLWHA and, in some cases, where care or coverage is denied may also result in a patient disengaging from their HIV-specific care. Conversation also discussed utilization management affecting access to pre-exposure prophylaxis for the prevention of HIV (PrEP), in the context of generic antiretroviral (ARV) products, barriers to accessing new products, as a benefit of reducing unnecessary medical tests and preventing contraindicated care. Patients and advocates readily shared how utilization management being a barrier to care is not an “outlier” situation in which patients being denied medically necessary care only occurs in “rare” occasions, rather this is a frequent occurrence with these payer practices routinely and regularly require additional administrative burdens to be met and sometimes requiring circumstances contraindicated by the Food and Drug Administration’s (FDA) approved indications for products or services. Advocates pushed back against the idea “you just want the latest drug like you want the latest iPhone” by emphasizing how the fight against HIV will not be won by having disparities in access maintained along lines of who can afford the most “elite” health care plans. Discussing how advocates can leverage state planning bodies and the role public payers could play in directing managed care organizations to reduce barriers to care as presented under utilization management practices, attendees envisioned robust yet protective access to care aimed at addressing issues of health equity and the critical role of payers in Ending the HIV Epidemic. Attendees also suggested evaluating utilization management practices under a lens of the Affordable Care Act’s rules against “discriminatory plan design”.
A lovely networking lunch followed the first discussion and attendees got the chance to bond with others they had yet to meet or reconnect with those they haven’t seen in a while. Honestly, the amount of respect and joy had during the lunch filled the room, with discussion of other areas of interest and even raucous laughter could be heard from the hallway. The energy generated from the first discussion was readily palpable.
The second discussion, lead by Community Education Group’s Director of Regional and National Policy, Lee Storrow, lead the second discussion on the status of Ending the HIV Epidemic in the South. In providing context for the update, advocates discussed their hopes and expectations when EHE had been announced under the Trump administration. While much energy had been generated, and that in and of itself is exceptionally valuable in the context of the 40-year fight against HIV, the “significant resources” advocates expected have not materialized and the addition of yet another plan has further complicated already layered reporting burdens for service providers funded under Ryan White and other HIV related initiatives and governmental funding streams. One attendee remarked “we’ve been doing the same thing for 30 years and the last 10 haven’t progressed, it’s time to do something different.” As a response, discussion moved to develop planning and programming to include the lens of “economic empowerment” of PLWHA by way of employment opportunities generated from these programs being targeted to recruiting staff from affected patient populations and served zip codes. Another attendee discussed how such an opportunity elevated her own professional experience and helped ensure her program better reflected the demographics of affected communities – ensuring better engagement and more effective outreach in her area. Attendees discussed the idea behind EHE as a “moon shot” but really seems to be hindered by the lack of cohesive systems communication across public health programs, in particular with data sharing between Medicaid and Ryan White funded programs in various states. This highlighted opportunities and barriers, manifesting in strategic planning on what cohesive data sharing might look like in an ideal. The session ended with conversation regarding “gatekeeping” among certain advocate circles when it comes to accessing institutional and governmental power and a certain lack of transparency as to exact “who” decision makers are due to bureaucratic processes, with the final note being “where is the red tape and who has scissors?”
The first day of planned discussion was capped with a dinner in which attendees continued to share with one another personal and professional details and ideas, making plans to socialize, discussing advocacy development opportunities, upcoming concerns regarding court ruling, legislation, and regulation, and programmatic planning within each other’s specific entities. The theme being “how can we help each other succeed?”
The second day of discussion held the final topic, COVID-19 impacts on public health, facilitated by CANN’s chief executive officer, Jen Laws (me). I opened the conversation by sharing the goal of the conversation being to “define” the impacts of COVID-19 on public health infrastructure and programs. Attendees were asked to share one “good” thing to come out of our collective response to the cOVID-19 pandemic and one “bad” thing (or “something we would like to go away”). Many attendees celebrated the innovation of flexibilities offered by various temporary governmental regulation and the “forced modernization” of health care in many situations – namely, telehealth. These flexibilities, including the continuous coverage requirement for Medicaid programs under the public health emergency declaration, are threatened to end as the public health emergency winds down and advocates attend the Fireside Chat expressed a certain foreboding of returning to “normal”. Specific highlights were given to the downside of relying on telehealth, especially for rural communities lacking the necessary infrastructure to make health care accessible – particularly in hospital deserts. Attendees reflected on the data “blindness” of the current moment, noting the Centers for Disease Control and Prevention’s (CDC) 2020 HIV surveillance report lack of completeness compared to previous years. “Bill Arnold reminded me frequently that the AIDS crisis is still just around the corner. We can’t blink,” I shared with the group to many nods as concerns for patients who dropped out of care weighed on the moment. Moving the discussion forward, attendees identified methods of advocate development and influencing state and federal power by more readily engaging manufacturers in their efforts to prioritize patient voices and experiences. The necessity to recognize the state of advocacy as needing re-development and investment was apparent and the note the event ended on, as attendees reflected the impacts of the COVID-19 pandemic on the public health and advocacy workforce.
While much discussion was had throughout the Fireside Chat, much more was committed to following the event. As with many in-person events, as opposed to virtual events, the quality of the experience was not absent on anyone there. It felt good to be in the physical presence of one another. We sought and gained inspiration and enthusiasm and we do so with clear cognizance of COVID-19 as a risk. If advocates and our partners can continue to similar efforts that both keep us safe and connected, the future (not without its challenges) is bright, equity-focused, empathic, and patient-driven.
A Call to Action: HIV Advocacy Must Affirm the Human Rights of Transgender People
The Community Access National Network (CANN) recently announced a campaign designed to promote transgender leadership in HIV advocacy. The campaign’s foundation is centered on a Values Statement on Affirming the Human Rights of Transgender People. Why?
Last year, after Terrence Higgins Trust of the United Kingdom united HIV advocacy and service organizations in providing a statement of support of the human rights of transgender people, William Arnold asked me, “Has anything like this been done here?” My answer was frank, “not precisely.” I explained what typically happens is HIV advocacy and service organizations issue statements of support independently of one another but often tend to lack defined actions, policy goals, or a commitment to more than words. Perhaps there’s programming our partners have but they’re often managed by cisgender peers or don’t speak to the actual needs of transgender people. Similarly, if they are grant-making entities, funding awards are often given to large umbrella organizations rather than smaller by/for organizations. This comes at the detriment of a diversified brain trust, unique employment offerings tailored to trans communities, and consolidates services and power outside of the reach of transgender communities…or at least, outside of our trust. Our power is often undercut because it is just easier to give funding to larger umbrella organizations.
“We should do something about that,” Bill told me. He always had the vision to understand that we cannot solve the health disparities in HIV without addressing the holistic needs of communities living with these disparities.
As 2022 politics offer this country a horrific but robust “trans panic 2.0” by way of more than 280 proposed pieces of state legislation and policy attacks, which often garner much less attention and have fewer remedies than campaigning against legislation or law suits, now is the time for HIV advocacy organizations, service providers, and funders to commit themselves to defending and advancing the human rights of transgender people.
A cornerstone of Bill’s personal mission was ensuring access to life saving medications for everyone who needed them. Such a mission is centered in a sense of justice and, frankly, love. It’s a mission, ultimately that all HIV advocacy, service organizations, and funders share. To that end, I need to be clear and to state that under no uncertain circumstances, gender affirming care is lifesaving care. Indeed, gender affirming care improves the HIV-related health outcomes of transgender people. In order to End the HIV Epidemic, in order to fulfill the promises many of us have made to our predecessors, our families, our loved ones lost in the fight against HIV… in order to fulfill our sacred promises, we must affirm and defend the human rights of transgender people in all aspects of life. We must do so in concert, in a fashion coordinated to support existing services and advocacy dedicated to transgender people and communities. We must do so with a unified and collaborative voice that uplifts, empowers, and invests in transgender people, communities, leadership, and rights.
On the issue of the human rights of transgender people, we can no longer act independently of one another or divorced from the transgender advocates already dedicated to this space. In order to act with the integrity this moment and movement needs, our partners must also commit to living the principles reflective of these human rights. Our houses must be in order as it were. In order to End the HIV Epidemic.
We are calling on all our partners to join us in support of affirming the human rights of transgender and gender diverse communities, to commit to the development of transgender leadership within our organizations and empower the self-determination necessary to End the HIV Epidemic.
Nonprofit organizations, community partners, and industry partners interested in lending their support to CANN’s campaign to promote transgender leadership in HIV advocacy, go to https://www.surveymonkey.com/r/XT8LCN7.
Jen’s Half Cents: The Trauma of Advocacy
Author’s note: This blog will not be giving any identifying information, screenshots, or links to provider or advocate comments. As the focus of this blog is a need to acknowledge the traumatic nature of working in public health and advocacy, protecting the identities and personal spaces of these heroes is of the utmost importance.
In April of this year, a friend I’ve worked closely with on a variety of personal and professional levels wrote me: “So…I’ve quit my job and left the field.”
They had spent years working for a health department funded entity serving both urban and rural areas, doing outreach, contact tracing, care and coverage navigation, advocating for clients with providers, for providers with administrative management – the full gamut of public health activity, specifically around HIV and STIs. Last March, they were sidelined to COVID work, face-to-face, often without protective equipment, lacking time off, enough staffing support, and more. Everything everyone else went through as COVID gripped the nation with the most stringent mitigation efforts. Over the summer they would be tasked with pulling “double duty” between COVID contact tracing efforts and HIV and STI work.
This story is not unique.
While higher profile exits from the field of public health have gotten some attention, as evidenced by CNN’s coverage in May on more than 250 public health officials having quit, resigned, been fired, or retired, those that take on the daily tasks of providing care within communities haven’t gained the attention they deserve. In January, the National Coalition of STD Directors published their “Phase III” survey of state STI programs and the findings were startling – every, single published comment discussed the issue of burnout among disease intervention specialists, data managers, and other client-facing staff. As the so-called Delta Variant of SARS-CoV-2 grips the nation in now a noted “fourth wave”, these human resources making the very body of public health haven’t been replenished. Many providers, advocates, community members, survivors, loved ones of those lost to COVID, some elected officials, and those at greatest risk of severe COVID complications or loving those who cannot yet access vaccines have taken to social media to voice their frustration with the state of the nation’s response to COVID-19.
For HIV/AIDS advocates, this isn’t new. We’ve spent four decades being ignored or actively discriminated against, having our stories stolen from us and mutilated in efforts to demonize us, our vulnerabilities and very disease state criminalized – used as justifications for denying us basic freedoms and access to the very care that keeps us and our loved ones alive. We’ve watched promises made, lofty goals announced, and the dollars behind those goals go unused due to lack of flexibility and then usurped to put children in cages and concentration camps, those dollars used to rip children from their parents, sometimes right before their eyes. People living with HIV accessing Ryan White programs are asked to detail to case managers intimate and personal aspects of their lives they may never share with other people. The same case managers who are over worked and underpaid and can’t be provided the supports they need in order to make clients feel like the ears and eyes prying in their lives actually care.
Yet and still, these same voices, these same lives and experiences are those relied upon to move legislators and policy makers, and beg and plead for changes that would reduce barriers to care for us and other people. There is not a single advocate I know, personally, who has not run into a barrier to care or system failure or – frankly – a bigot abusing politics or process who has not turned around and fought with every breath to ensure those harms are ended. “I will do everything I can to make sure no one ever has to go through what I went through.” There is a love in this sentiment that cannot be measured. It fills you up – it fills me up – from your gut to your chest, it becomes the wind at your back and that love inspires and sustains…for a while. That love stands in stark contrast to the politicized and polarized response to COVID-19 mitigation efforts and vaccination campaigns where frustrations run up against conspiracy theories and near sociopathic adherence to contrarian conflict.
We don’t talk about what it is, the personal cost, to retell our stories time and again. We don’t talk about the nature of purposely reengaging our traumas in order to advocate for the world around us. There’s a fear that runs quiet in the background when some decides to change their path or step back from advocacy. That fear often sounds like a hushed phone call, “Am I a bad person for not being up for this?” All that fear compounds with the daily stress of paying bills or commuting or caring for family or going to school so you can be heard with more legitimacy or…or…or….
That piece is the emotional labor of survival.
Advocacy and public health are not for the faint at heart. And….
Those entities, governmental and private, funding care and advocacy, regardless of space – be it oncology, HIV/AIDS, STIs, substance use recovery – need to consider these costs when evaluating awards. When compensation for these stories or “community engagement” often tops at twenty dollars an hour, funders are telling those with the courage and voice to share those stories that our years of trauma – the very expertise of “lived experience” or existing at the intersections making up your consumer base – is worth less than the average cost of your tank of gas. Supporting communities means supporting a living wage, supporting operations costs, supporting expanding staffing, supporting entities with mental health days as part of leave policies. Supporting effective advocacy and efficient public health means supporting the very humanity behind these efforts.
Jen’s Half Cents: Fixing the Broken Patient Advocacy Pipeline
One of my first conversations with Bill Arnold was particularly memorable. I had just started hormone replacement therapy, my beard wasn’t nearly as strong as it is now, and I’m certain I looked like a 16-year-old. In a moment of career transition, I had also recently joined the board of directors for ADAP Advocacy Association (aaa+). The Washington, DC air was warm, indicating a cool evening ahead, and we were taking a break outside during the ADAP Annual Conference. Following a detailed but brief chat about the state of political play around the Affordable Care Act, we went back inside for the next session and ran into Brandon M. Macsata, aaa+ CEO. What ensued was a discussion of strategy to recruit and engage younger advocates in patient advocacy and in particular the space of HIV. I think, in no small part, because I was the youngest board member at the time and because I was one of the newest board members, this “getting to know you” opportunity was also an excellent opportunity to discuss various priorities in advocacy and the current state of the advocacy ecosystem.
It should come as no surprise we independently concluded the health of the patient advocacy ecosystem was weak, having surpassed the moment of crisis, interests in our needs were waning, especially with certain competing priorities, advancements in therapeutics to treat HIV, and chronic nature of the illness that brought us all together. To be honest, the time between then and now, much like the nature of any chronic illness, has not much changed and it certainly hasn’t advanced. Even with the heavy reliance on a variety of expertise from the field of HIV to address, mitigate, manage, and – with any hope – defeat COVID-19, HIV patient advocacy has suffered greatly in the last decade. Arguably longer.
I’ve often mulled this conversation and the complex realities impacting the health of our aging advocate community. The truth is, many of the survivors of the AIDS Crisis never expected to live this long. All that work, all that fight, transformed into one of three paths; death, patient, or industry. Many people who took up the mantle of HIV patient advocacy or care delivery with extraordinary efficacy. To date, given the enormous obstacles of funding, access, stigma, and systemic biases, debatably, few public health campaigns have been as effective as those associated with the prevention, testing, and treatment of HIV. However, despite all of our successes and advocacy, according to the Centers for Disease Control and Prevention, progress in combatting the domestic HIV epidemic has stagnated over the last decade.
Central to this issue, few states have expanded their HIV funding in the last decade (kudos to Georgia’s HIV advocates for the recent influx of state funding to their State AIDS Drug Assistance Program), onerous rules on how to funds may be spent have left federal funds on the table, unused until usurped by political ideologues to put kids in cages, service providers are experiencing an extraordinary rate of burnout, competition in advocacy space has discouraged younger talent from staying in the field, or problematic policies or personalities in legacy institutions have pushed these young advocates to start their own agencies with little in the way of support – further compounding the field of competition.
Our ideas have aged as much as our leadership has. At the 30-thousand-foot view, this is one of many of the core reasons we’ve failed to advance in our fight against HIV.
In order to meaningfully advance HIV patient advocacy and thus work toward a more equitable regulatory and funding landscape, private funders and foundation partners need to re-examine “leadership development” initiatives and projects. Currently, these so-called “leadership development” programs are often short-lived, focus on recruiting a specific demographic audience, may share some story-telling skills, and maybe offer some networking among audience members. The idea being to further engage highly affected populations which may not otherwise fit traditional requirements in hiring and promotion screening. Often, these funds go to large entities which may lack specific expertise or experience with the intended demographic audience. Deliverables for these programs do not require hiring or connecting to employment opportunities for attendees, nor do they include requirements to advance leadership opportunities with existing staff or external recruitment from target demographics or affected community. These “leadership” programs lack any substantial applied benefit for affected communities, target demographics, or the patient advocacy landscape at large.
Internally, funders and providers required to engage community advisory boards often suffer the same stagnation. Community advisory boards maintain the same membership for years and years, with limited power of influence over industry activities, and zero incentive to seek new voices or experiences, including lack of compensation for time spent. To be clear, for our pharmaceutical manufacturing partners and government agency partners: community advisory boards should be disease state or demographic identity specific and not generalized for chronic illnesses or general populations in order to meaningfully affect the health and wellness of these communities, ensure equitable clinical trial and programmatic designs, and prioritize the needs of the impacted communities as those communities define them.
The argument goes “We need the institutional knowledge or connections. We can’t afford to lose the investment already made into these members.” And whole host of other reasons that amount to “that’s too hard.”
In order to move forward or even maintain effective advocacy, funders, both public and private, commercial industry and non-profit industry, need to re-work the deliverables associated with advancing leadership and recruiting and fostering advocacy expertise.
In short, it’s time to fund the retirement of aging leadership that never thought they’d live this long.
This is not a flippant suggestion, nor is it intended to provoke overnight changes that ultimately weaken the human infrastructure of advocacy. Rather, in order to meaningfully invest in the patient advocacy pipeline – and ultimately ensure shared interests of communities and industry and public health are met – “leadership” and “development” programs should aim to require, at least, the following, as appropriate:
Recruit candidates on the basis of advancing their personal careers and career goals, in alignment with the entity’s mission, as opposed to existing skill sets (job skills can be taught and indeed most are taught on the job)
Develop and implement a leadership change plan (ex. Year 1: identify candidates, Year 2: Mentor candidates in role, function, and networking. Year 3: Shadow candidate in performance of duties, critique and advise)
Review and update human resources policies including but not limited to education requirements for positions (ie. lived experience in lieu of formal education requirements), compensation relative to private industry competitors and best practices, and staff demographics relative to client demographics (these should be relatively on par to each other)
For conference style programs: require job placement or work search assistance until placement is found for the candidate
For community advisory boards: term limits, industry standard consultant compensation for board members, demographics reflecting that of affected communities, and member transition and mentoring programs aimed at recruiting
Part of how we’ve lost our way in advocacy is focusing on “cause” to drive interest and, frankly, cause does not keep the lights on. As non-profit industry moves to better understand that “cause over compensation” is robbing us of our best and brightest minds, so must our funders. We cannot recruit and retain the most creative generation of talent by racing to the cheapest contract.
President Biden is oft cited as saying “Don't tell me what you value, show me your budget, and I'll tell you what you value.” Though the sentiment has long existed and touted by others. And it misses the point of implementation.
Your integrity is spending your money in a way that actualizes your values.