PTSD

Figuring out how to survive can be overwhelming. As I look back on my life, I see how the post-traumatic stress disorder (PTSD) of HIV still impacts my life. Combine that with the isolation and trauma of COVID, and my feelings of depression are real. Trauma informed HIV services are more critical than ever. Our staff, clients, and donors are all going thought it. How do you manage the PTSD of HIV in the middle of the COVID epidemic?

I thought life would start getting back to normal this fall, so the Delta variant has been a gut punch. With breakthrough infections and so many people unwilling to get vaccinated, I worry about the future. The worry can lead to depression because there is no end in sight. The excitement about vaccines has been tempered by the need for boosters.

I’m sharing my journey because there is so much stigma about depression and too often it goes untreated. I grew up in a family that believed depression was a luxury for the rich. Therapy was for people with money. Looking back on my parents, I believe the PSTD they suffered in the internment camps during WWII set the trajectory for their lives. To this day, life in the camps is not openly discussed in most Japanese families. As children of survivors, we have little to no information about what happened.

It’s time to take back the narrative. What happened in the camps to my parents was not their fault. What happened to my community at the start of the HIV epidemic was not our fault. What happened to the world during COVID is not our fault. My parents lived in shame with the burden of being Japanese when the US was at war with Japan. Too many gay men live in shame and take on the unfair burden that HIV was a punishment from God. Too many people will die from COVID because they don’t trust the government or vaccines.

As we fight our way back, the need for trauma informed HIV services is more critical than ever. We are a world in trauma trying to provide HIV services to communities who have been traumatized because they are different. Thank you Jeffrey Long for the infographic. It’s time to “come out of the closet” again. PTSD is real and its not our fault. I am crazy because of a chemical imbalance that was triggered by life experiences beyond my control. Too many people suffer from the stigma of living with HIV. This stigma can lead to isolation which is a pathway to depression. On better days I wear my depression as a badge of honor because it reminds me that I survived the early days of the HIV epidemic. The pain reminds me to never forget the people we lost and to fight like hell for the living. I’ve also learned that asking for help is not a bad or weak thing. There are healthcare professionals and medications that can make a difference. You are not alone. In my mind I will outlive COVID. Now I just need to convince my heart.

God is Love and Love is for Everyone,
Paul Kawata
NMAC

Paul Kawata

 

 

 

 

 

 

 

NMAC Announces 2021 Capitol Hill Champions Award Recipients

NMAC is pleased to announce Chairwoman Maxine Waters and U.S. Secretary of Housing and Urban Development Marcia Fudge as the 2021 Capitol Hill Champions Awards recipients. The awards will be presented at a virtual event in December.

In honor of the late John Lewis and Elijah Cummings, NMAC will present awards in their names for their lifelong commitment to racial justice and creating equality for all.

The John Lewis Good Trouble Award will be awarded to Chairwoman Waters who embodies John Lewis’ dedication to racial equality on all fronts. Throughout Chairwoman Waters’s 40 years of public service, she has been at the foreground of tackling controversial and difficult issues. Whether it be her success on affirmative action legislation during her time as a California state legislator to spearheading the creation of the Minority AIDS Initiative, Maxine Waters has been a champion of human rights and embodiment of dedication to racial equality. The award will be presented by last year’s recipient, Speaker Nancy Pelosi.

The Elijah Cummings Award for Minority Health Equality will be presented to Secretary Fudge, who dedicated her congressional career to fighting for healthcare equality and equity for minority communities. As Chairwoman of the Congressional Black Caucus and Congresswoman from Ohio, Marcia Fudge successfully tackled issues spanning the political gamut. Through her leadership as HUD Secretary, she is working vigorously to solve issues such as the growing homelessness crisis and racial disparities affecting homeowners. The award will be presented by Dr. Maya Rockeymoore Cummings.

What Is Fair?


A White Gay colleague recently shared his concerns about speaking out and not getting canceled. I appreciated his courage and honesty. This is a difficult time. Between COVID, Black Lives Matter, the Jan. 6th insurrection, and climate change, the paradigm is shifting, and we are still working out what that means.  There are no clear rules and that can be scary. What some White folks don’t understand is that the world was built to accommodate them and their culture. Making a world that works for people of color and people who are different means taking some of that away. For example, “what is fair” usually is code for “what is fair to White people?” When something is fair to people of color but not White people, then it’s usually deemed unfair. Or the transverse, when something is fair to White people but not People of Color, then it is usually deemed fair.

Last year White America woke to the over policing of Black people through the killing of George Floyd and too many others to name. What happens when something is unfair to People of Color but needed in White communities? This is the paradigm shift that America is working to answer. In our fight to end HIV, PrEP users are 75% White, yet the majority of people living with HIV and the majority of new cases of HIV are among people of color. PrEP is reaching Gay White men, but not Gay Black men. What does that mean?

I remember talking with a White straight cisgender male federal official who told me he had the answers for ending the epidemic. Yet his leadership brought no changes in the outcomes. What happens if we end the HIV epidemic in White America while HIV continues for People of Color? Some might say the fight is over and we won.

To my White friends, here is how I navigate these challenges. As an old fem Asian cisgender Gay man and the Executive Director of the agency formerly known as the National Minority AIDS Council, I am professionally aware of the privileges and discrimination that goes with how I present myself to the world. Part of my job is to hold-up communities that are often overlooked or undervalued. Most of my job is to listen and learn from those communities.

When I am in spaces for African Americans, Latinx, American Indians/Alaska Natives, women, the transgender community, people living with HIV, then I shut the fu** up and listen. When I am in spaces for People of Color, Asians, LGBTQ, or the general HIV community, then I fully engage and feel a responsibility to bring my perspective to the table. It’s been my experience that most people get in trouble when they try to fully engage at tables not meant for them. My experience of too many White people, especially cisgender White heterosexual men, is they believe all the tables are set for them because mostly they are.

Privilege is taking all the oxygen out of the room. I purposely use my privilege in rooms full of White people. I want them to understand that they are not the only important voices. It took me a long time to get comfortable, some would say too comfortable, with this privilege. As an Asian man, it was not something that came naturally. In the world of HIV, it is a very important skill. It is difficult if not impossible for many of you to understand what it means to present as White, yet it is something that every person of color intimately knows. Our value depends on how we present ourselves in the world. The closer we show up as white heterosexual men the better. For most of us that is impossible, yet that is the gold standard for power and wealth in America.

COVID has made us insane, and I think it is the catalyst for this paradigm shift. The virus has makes us rethink everything. If this is my new reality, who do I want to be? Where do I want to live? How do I want to present myself to the world? For some of us, it will change the way we work. Are you willing to commute 90 minutes to and from work? I could never have imagined NMAC’s staff would primarily work from home, yet that is what we do.

COVID, Black Lives Matter, the Jan. 6 insurrection, and climate change have forced a reckoning. We can probably end the HIV epidemic in the White community by 2030, but if we stay on the same course, I have real doubts about ending HIV in communities of color. This is my pledge to the HIV movement: what is fair cannot be based on White privilege. Our work must embrace the challenge of what is fair to communities who have lived under generations of discrimination and oppression. This is bigger than change; it is a shift in the paradigm. Ending the HIV epidemic in America starts by re-looking at what is fair.

 

God is Love and Love is for Everyone,
Paul Kawata
NMAC

Paul Kawata

 

 

 

 

 

Empowerment & Actions to Advance the HIV+ Elders’ Policy Agenda

By Moisés Agosto-Rosario, Director of Treatment

NMAC and its Strong and Healthy Program is thrilled to introduce the HIV 50+ community to the National HIV and Aging Advocacy Network (NHAAN) to commemorate the National HIV/AIDS and Aging Awareness Day. NHAAN is a network of individuals advocating for our collective and cumulative interests as persons aging with HIV. For the past year, a group of NMAC’s HIV 50+ scholars has been creating NHAAN to build a strong network of HIV 50+ advocates on the foundation established by the Denver Principles and MIPA. The Network’s vision is to envision a world in which all people thrive as they age with HIV: Physically, socially, financially, spiritually, emotionally, and in all aspects of their lives.

The formation of this new Network is crucial to advance the aging and HIV advocacy agenda. There are a significant number of issues that need attention. First, we need biomedical research to understand better the biology of aging with HIV. Second, we need to upgrade the regular medical care and psychosocial services for HIV+ people to respond to the needs of those HIV 50+. Same with mental health, substance abuse, and other social determinants of health. Aging and HIV have a prominent place in NMAC’s policy agenda. In this article, we want to share with our constituent HIV 50+ some of our analysis and strategy.

Due to the development of effective antiretroviral treatment and the improvement of HIV care, the life expectancy of people living with HIV (PLWH) has dramatically improved. In the United States, from 2014 through 2018, the most significant percentage increase (51%) in the rate of persons living with diagnosed HIV infection was among persons aged 65 years and older (Center for Disease Control, HIV Surveillance Report, 2018). Of the 1.4 million PLWH in the United States, 50% are fifty years of age and older. By 2030, PLWH 50 years and older will constitute 70% of the individuals living with HIV in the U.S. (WING E. J.,2017, p.128/131-144). This group comprises the first cohort of people living with HIV; long-term survivors and aging over 50. While the life span improves, other non-AIDS-related comorbidities persist in PLWH (Schouten J, 2014;59(12):1787-1797). Social isolation and post-traumatic stress disorders (PTSD) are an increasing problem among PLWH over 50. It interferes with their ability to rebuild social networks, adhere to HIV medicine, risk HIV transmissibility, and find the healthcare and psychosocial services they need (Foley L, 2021 Sep 2;11).

A cross-functional approach to long-term medical care and assistance is required. The health systems built to address the needs of PLWH in the United States are not prepared to adequately care for those aging with HIV. It is crucial to integrate HIV and geriatric care. Early screening for comorbidities and prevention protocols of healthy living are necessary to ensure health, quality of life, and longevity among PLWH at age 50 and over. Integrated health and social services should respond to the changing physical, psychological and social needs of PLWH over 50 who need to use HIV and non-HIV services (Autenrieth CS, 2018).

Clinical data suggest that aging with HIV will become a significant public health challenge to address at the federal, state, and local levels. The basic standard of care for PLWH needs to be able to care for the elder by managing HIV infection, prevent and monitor early and multi-morbidity. Today, caring for PLWH consists of controlling HIV replication and lower it to undetectable levels. Viral suppression allows for increased CD4 cells to normal levels and restoring the person’s ability to fight opportunistic infections (Deeks SG, 2015 Oct 1;1:15035). However, viral suppression is only one aspect among other critical issues in the long-term care of those aging with HIV. The HIV + community lives with long-term immune activation due to the constant viral replication inside the HIV latent viral reservoirs in the body (Dufour C, 2020 Jul 1;130(7):3381-3390). The body reacts to the continuous presence of HIV by producing proteins that cause chronic inflammation, which potentially damages organ tissue (Deeks SG, 2013 Oct 17;39(4):633-45).

This immune response plays a crucial role in the aging process of PLWH, resulting in premature aging-related comorbidities (WING E. J.,2017, p.128/131-144). Therefore, even with a well-controlled HIV viral load, PLWH presents age-related conditions seen in their 15 years older HIV-negative counterparts (Willig AL, 2014 Mar;11(1):35-44). Therefore, essential stakeholders are to be part of ensuring the comprehensive provision of services. The stakeholders are HIV 50+ advocates, the U.S. Congress, the Office of National AIDS Policy (ONAP), the Health Resources and Services Administration (HRSA), the Health and Human Services (HHS) Administration on Aging, the National Council on Aging (NCOA), the Center for Disease Control (CDC), the Substance Abuse and Mental Health Services Administration (SAMHSA), the National Institutes of Health (NIH), the Center for Medicare and Medicaid Services (CMS), private health insurance, the pharmaceutical industry and the Veteran Affairs (V.A.).
Policy actions to consider are modernizing the Ryan White Care Act, prioritizing and funding research on HIV and aging, providing capacity building on HIV-related services to the Area Agencies on Aging (Federal Agency on Aging) HHS.

Modernization/Reauthorization of the Ryan White Care Act
Congress first enacted this legislation in 1990 as the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act. Legislators amended and reauthorized the CARE Act four times in 1996, 2000, 2006, and 2009. The Ryan White HIV/AIDS Program (RWHAP) legislation has been amended with each reauthorization to accommodate new and emerging needs. The implementation of the Ryan White Care Act is the responsibility of the Health Resources and Services Administration (HRSA). The Ryan White HIV/AIDS Program is the most extensive federal program focused on providing a comprehensive system of HIV primary medical care, essential support services, and medications to low-income people living with HIV who are uninsured or underserved. Ryan White programs are “payer of last resort,” which fund treatment when no other resources are available. This legislation provides grants to cities/counties, states, and local community-based organizations. Over the last three decades, The Care Act has played a critical role in the United States’ public health response to HIV. What was once fatal is now a manageable, chronic condition. In 2019, 88.1% of Ryan White HIV/AIDS Program clients had suppressed viral load, exceeding the national average of 64.7 %. Thus, the RWHAP proves to be essential for the care and well-being of PLWH. Modernization of the Ryan White Care Act is vital to serve the HIV+ elder population’s increasing population adequately. We could argue that if we modernize the RWHAP, elders living with HIV will receive the correct medical care if comorbidities present earlier when they still do not qualify for Medicare. We see diagnoses of non-HIV comorbidities early in their 40’s and ’50s, twenty to ten years before they are eligible for Medicare. Instead of creating a new and costly health system to take care of this population, Congress can reauthorize the CARE Act to accommodate new and emerging needs for the HIV+ elders. With a reauthorization, the RWHAP can be modernized to integrate HIV and geriatric care services that will potentially impact the QOL and lifespan of PLWH.
Prioritize and fund research on HIV and aging.

The NIH’s Office of AIDS research develops a comprehensive HIV/AIDS research plan and established priorities. In addition, it ensures a fair distribution of AIDS research funding through the institutes, making sure the goals and priorities of the research plan are the guiding principles of AIDS research across institutes. This way, duplication of efforts is avoided, fostering collaboration and new research. Because today’s HIV elders represent the first cohort of PLWH aging, Congress should invest in HIV research to better understand the biology of HIV aging. For example, suppose we better understand the role of inflammation in early aging. In that case, we might figure out a way to treat the inflammation mitigating early development of non-HIV comorbidities, impacting QOL and life span. In addition, there will be a return of investment as the cost of treating these conditions will be more expensive than preventing them with early screening, treatment, and preventive care.

Collaboration between HRSA’s HIV AIDS Bureau (HAB) and the HHS Administration on Aging
Congress passed the Older Americans Act (OAA) in 1965 to resolve community social services for older persons. The legislation established authority for grants to states for community planning and social services, research and development projects, and personnel training in the field of aging. Today, the OAA is a significant vehicle for the organization and delivery of social and nutrition services to this group and their caregivers. Under this legislation, HIV+ elders, people with cancer, and other chronic conditions benefit from the essential programs and services offered through the states and the Network of area agencies. The OAA also includes community service employment for low-income older Americans, training, research, and demonstration activities in the field of aging, and vulnerable elder rights protection activities. Collaboration between HRSA and the HHS Administration on Aging on specific HIV services and capacity building can offer providers in the area agencies on aging an understanding of the particularities of HIV services for the HIV+ elder. This collaboration might foster better QOL and have an impact on lifespan. This collaborative approach is a cost-effective way to maximize the resources and services already funded.

In conclusion, these are only some of the actions we can take that will significantly impact the elder living with HIV. Therefore, as a community, we are to be intentional in our efforts and facilitate the engagement and direct participation of the HIV 50+ in all advocacy affairs about improving the health and quality of life of the elder living with HIV.

References

Autenrieth CS, Beck EJ, Stelzle D, Mallouris C, Mahy M, Ghys P (2018) Global and regional trends of people living with HIV aged 50 and over: Estimates and projections for 2000–2020. PLOS ONE 13(11): e0207005. https://doi.org/10.1371/journal.pone.0207005

Cahill, S., & Valadéz, R. (2013). Growing older with HIV/AIDS: new public health challenges. American journal of public health, 103(3), e7–e15. https://doi.org/10.2105/AJPH.2012.301161

Cantor MH, Brennan M. (2000) Social Care of the Elderly: The Effects of Ethnicity, Class, and Culture. New York, NY: Springer.

Capeau J. (2011). Premature Aging and Premature Age-Related Comorbidities in HIV-Infected Patients: Facts and Hypotheses. Clinical infectious diseases: an official publication of the Infectious Diseases Society of America, 53(11), 1127–1129. https://doi.org/10.1093/cid/cir628

Centers for Disease Control and Prevention. HIV Surveillance Report, 2018; vol.31. http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html. Published May 2020. Accessed June 5, 2021.

Charles A. Emlet, Ph.D., ACSW, Shakima Tozay, MSW, Victoria H. Raveis, Ph.D., (2011) “I’m Not Going to Die from the AIDS”: Resilience in Aging with HIV Disease, The Gerontologist, Volume 51, Issue 1, February 2011, Pages 101–111, https://doi.org/10.1093/geront/gnq060

Deeks SG, Overbaugh J, Phillips A, Buchbinder S. HIV infection. Nat Rev Dis Primers. 2015 Oct 1;1:15035. doi: 10.1038/nrdp.2015.35. PMID: 27188527.

Deeks SG, Tracy R, Douek DC. Systemic effects of inflammation on health during chronic HIV infection. Immunity. 2013 Oct 17;39(4):633-45. doi: 10.1016/j.immuni.2013.10.001. PMID: 24138880; PMCID: PMC4012895.

Dufour C, Gantner P, Fromentin R, Chomont N. The multifaceted nature of HIV latency. J Clin Invest. 2020 Jul 1;130(7):3381-3390. doi: 10.1172/JCI136227. PMID: 32609095; PMCID: PMC7324199.

Emlet CA. An examination of the social networks and social isolation in older and younger adults living with HIV/AIDS. Health Soc Work. 2006;31(4):299–308 [PubMed] [Google Scholar]

Foley L, Larkin J, Lombard-Vance R, Murphy AW, Hynes L, Galvin E, Molloy GJ. Prevalence and predictors of medication non-adherence among people living with multi-morbidity: a systematic review and meta-analysis. BMJ Open. 2021 Sep 2;11(9):e044987. doi: 10.1136/BMJ open-2020-044987. PMID: 34475141.

Levy, M. E., Greenberg, A. E., Hart, R., Powers Happ, L., Hadigan, C., Castel, A., & D.C. Cohort Executive Committee (2017). High burden of metabolic comorbidities in a citywide cohort of HIV outpatients: evolving health care needs of people aging with HIV in Washington, DC. HIV medicine, 18(10), 724–735. https://doi.org/10.1111/hiv.12516

McMillan, J. M., Krentz, H., Gill, M. J., & Hogan, D. B. (2018). Managing HIV infection in patients older than 50 years. Canadian Medical Association Journal, 190(42), E1253–E1258. https://doi.org/10.1503/cmaj.171409.

Mullings L, Schulz AJ. (2006) Intersectionality and health: an introduction. In: Schulz AJ, Mullings L, editors. Gender, race, class, & health: intersectional approaches. San Francisco, CA: Jossey-Bass; 2006.

Panel on Antiretroviral Guidelines for Adults and Adolescents. Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents with HIV. Department of Health and Human Services. Available at https://clinicalinfo.hiv.gov/sites/default/files/inline-files/AdultandAdolescentGL.pdf.

Schouten J, Wit FW, Stolte IG, et al. (2014) Cross-sectional comparison of the prevalence of age-associated comorbidities and their risk factors between HIV-infected and uninfected individuals: the AGEHIV cohort study. Clin Infect Dis. 2014;59(12):1787-1797.

Warren-Jeanpiere, L., Dillaway, H., Hamilton, P., Young, M., & Goparaju, L. (2017). Life begins at 60: Identifying the social support needs of African American women aging with HIV. Journal of health care for the poor and underserved, 28(1), 389–405. https://doi.org/10.1353/hpu.2017.0030

Watkins, C.C., Treisman, G.J. (2012) Neuropsychiatric complications of aging with HIV. J. Neurovirol. 18, 277–290 (2012). https://doi.org/10.1007/s13365-012-0108-z

Willig AL, Overton ET. Metabolic consequences of HIV: pathogenic insights. Curr HIV/AIDS Rep. 2014 Mar;11(1):35-44. doi: 10.1007/s11904-013-0191-7. PMID: 24390642.

WING E. J. (2017). The Aging Population with HIV Infection. Transactions of the American Clinical and Climatological Association, 128, 131–144

Remembering Carl

Archbishop Carl Bean passed last week. The funeral is Saturday. I’m going, but I’m not ready. I’m not ready to say goodbye to the man who changed the course of my life. It was Carl who talked me into taking the job at NMAC.

Carl’s many achievements were outlined in articles in the New York Times, the Washington Post, and on the Today Show. I knew a different Carl from the person in these publications. He was my friend and partner in crime. We were each other’s lifeline in the storm called AIDS. Together, we navigated some of the most difficult days in the epidemic. I knew the man who wanted to get away, if only for a moment, from the shackles of his position. I will never fully understand the burden of leading a religious movement, but I often saw it in his eyes as members reached out for answers. Why did God take my child?

Carl and I traveled the world together. He loved to go on cruises, so we went to Alaska to see the glaciers, the Caribbean to look for gentleman callers, and ultimately, a trans-Atlantic crossing from New York to Southampton. We visited the Vatican, the Louvre, and the west end of London. Most of these trips were work related because Carl was asked to preach all around the world to bring his unique voice of liberation theology that God is love and love is for everybody.

I never knew Carl the Broadway entertainer, but from his stories, I imagine he was amazing. He could talk and I could listen for hours about performing on Broadway or touring the country. It was his work in the entertainment industry that would later support his fight to end HIV. I remember sitting next to him when Whitney Houston performed at a benefit for his agency. It was very heavy times. He had Dionne Warwick on speed dial, and Maxine Waters not only returned his calls, but also called to check in. While it might seem glamorous on the outside, it was also a huge burden.

People would cry as they reached out to hug him. Members of his church would copy his sermons because his words were touched by the Holy Spirit. I think it can mess with your mind and was part of the reason Carl went into seclusion. For many years he did not leave his home or welcome visitors.  However, Carl always had God.

I was not religious. I felt the church had turned its back on me and my kind. Before meeting Carl, I had never attended services in a Black church. Going to Carl’s church was mind blowing. My friend was singing and preaching like he was touched from above. You could almost watch him go to another place as he spread the gospel of the Lord. As a child I went to Japanese Presbyterian Church. We were the polar opposite of my experience in Carl’s church. To be in a room full of love was transformative, especially because this was in the mid 1980s during some of the most difficult times in the HIV epidemic. What we take for granted now was truly revolutionary when Carl started the Unity Fellowship Movement. He started a religious movement for the African American LGBTQ community at the height of the HIV epidemic. Out of his work with Unity Fellowship Movement, he opened the Minority AIDS Project (MAP), the first minority-led HIV organization. As the Executive Director of MAP, Carl worked nationally as one of the founders of the National Minority AIDS Council (NMAC)

It was our work on NMAC that served as the foundation for our friendship. Together we would travel the country, him preaching and me teaching about HIV. Back then, people of color were too often marginalized. Carl and I became a team to fight the stigma and racism that was too prevalent in our work. We would spend hours talking about race and our frustrations with people in power. His concerns for his communities became the corner stone of the work. Carl was a living example of liberation theology.

I got to talk to Carl the day before he passed. He was in a coma, so they had to hold the phone to his ear. I thanked him for being a gift to my life and our movement. I let him know that it was OK to let go. His was a life well lived. Finally, I told him that I loved him and will miss him. This is a ritual from the early days of the epidemic that too many of us know too well. Thank you, Carl, for being my friend. My life is better because you were in it.

God is Love and Love is for Everyone,

Paul Kawata

Policy Update: If Governors Won’t, Congress Must

By Joe Huang-Racalto, Director of Strategic Partnerships & Policy

U.S. Capitol BuildingIt is rather remarkable that 12 states still refuse to expand Medicaid, leaving two million Americans subject to the Medicaid gap – denying these Americans access to Medicaid and making them ineligible for subsidies to purchase private insurance on the Marketplace.

This is inexcusable.

The refusal for these governors and state legislatures to expand Medicaid under the Affordable Care Act (ACA) is another attack on vulnerable citizens who reside in these states. Neither political courage nor political will will change the minds of legislators in these remaining states:

Alabama, Florida, Georgia, Kansas, Mississippi, North Carolina, South Carolina, South Dakota, Tennessee, Texas, Wisconsin, and Wyoming

The Center for Health Law and Policy Innovations at Harvard Law School recently issued a report (June 2021, Filling the Medicaid Coverage Gap A Federal Policy Priority for People Living with HIV) that correctly and strongly stated “HIV demonstrates the cruelty of this gap and the widening disparities it has wrought across Medicaid and non-Medicaid-expansion states. With access to regular antiretroviral treatment and care, HIV is not only manageable, it is impossible to transmit to others, making increasing access to care and treatment a public health priority and at the center of the federal government’s ambitious plan to end new HIV transmissions by 2030. But for the 20% of people living with HIV in non-Medicaid-expansion states who remain uninsured, regular access to care and treatment is far more challenging. Ninety-seven percent of individuals in the Medicaid coverage gap live in the South, a region that is also home to over 50% of new HIV transmissions.”

I cited this section because it not only factually connects the failure of these states to the high percentage of new HIV transmissions, but because NMAC has consistently advocated for an all-approach towards Ending the HIV Epidemic (EHE).

That is, we cannot End the HIV Epidemic until we close this Medicaid gap.

NMAC recently joined other NGOs to advocate that Congress take immediate action on this issue. Absent action from these states, Congress must step in.

NMAC is proud of our history of advocating for bold actions and this is yet another example. While there are a few options for Congress to take, perhaps the boldest option would be for Congress to direct the Centers for Medicare and Medicaid Services (CMS) to develop a federal Medicaid plan for these remaining 12 states.

If you live in one of these states, we’d like to hear from you – NMAC will help you advocate for change. Please email Andres Rodriguez at ARodriguez@NMAC.org. We will form an advocacy committee to help constituents in these states mobilize.

Few issues are more urgent if you are living with HIV in one of these states and are in the Medicaid gap. If these states will not act, Congress must.  While the American Rescue Plan does include incentives, it’s worth noting that no incentives to date have been enough to encourage these states to expand Medicaid. Therefore, we must do everything possible to provide those living with HIV in these states a more permanent solution.

A good first step would be to federalize Medicaid in these remaining states.

Challenges for Aging People with HIV




ESCALATE 2




A Special Announcement on USCHA

This is the letter I didn’t want to write. When we announced the 2021 United States Conference on HIV/AIDS was going to be in person, I was joyous about the thought that we could come together. Unfortunately, the Delta variant of COVID is too easily transmitted, even by people who are fully vaccinated. What seemed like a reasonable decision in May now feels impossible. After a long discussion with our board, NMAC will move USCHA to the virtual space. I am so sorry. I know this is very disappointing. NMAC must always prioritize the health and well-being of people living with HIV (PLWHIV). Data from Berlin about the impact of COVID on people living with HIV along with new information about the Delta variant made an in-person meeting with thousands of participants too much of a risk.

The virtual USCHA will be pushed back to December 2-3 (World AIDS Day Adjacent). These later dates give staff time to close-out and pivot to a virtual meeting. Also, the Biden-Harris Plan to End the HIV Epidemic is slated to be released on World AIDS Day, so there is much to be discussed.

I’m sure you have a lot of questions. Join us for a Facebook Live chat this Thursday, Aug. 12, at 1:00 PM on our Facebook page. Our Conferences Director Tara Barnes-Darby, and our Treatment Director Moises Agosto will be available to answer questions. You can also check out the FAQ page on the USCHA website.

This decision was based on data from two key reports.  The first was the report out of Provincetown that revealed that vaccinated people can transmit the Delta variant as easily as those who are not vaccinated. The second was the study of people living with HIV over 65 in Berlin that found high risk of death from Covid. Those two reports convinced us that we could not guarantee the safety of conference attendees.

Dr. Fauci Speaks @ Opening Virtual Plenary
Dr. Anthony Fauci will be part of USCHA’s Opening Virtual plenary. He will join Dr. Rachel Levine to update our movement on efforts to end two epidemics. We all know how busy COVID is keeping him, so NMAC is extremely grateful that he will be part of this session. Given his busy schedule, it will be recorded in advance. It is not easy being the face of the Trump and Biden COVID response. He has shown a grace and grit that he learned fighting HIV/AIDS.

Telling the Truth & Asking for Help
As you can imagine, ending an in-person conference creates financial issues. Our cancelation insurance does not cover meetings that we cancel. NMAC will be fine in the long haul, but we ask for your grace and patience. We hope that most attendees, exhibitors, and sponsors will still be a part of the virtual meeting. This is the second year that we were unable to hold USCHA and your support is needed and appreciated. The agency also understands this is not the event that we all wanted, so we will give refunds.

Registration
During the week of August 9, NMAC will send out an email from the registration portal to all registrants with instructions on transferring or cancelling your registration. If you have not received your email by August 13, contact the Conferences division at conferences@nmac.org. Please be patient; refunds will be processed in 3-4 weeks.

The registration fee for the virtual USCHA is $295. NMAC will automatically refund the difference. If you do not wish to attend this year’s USCHA, you can either:

  • Option 1: Keep your registration to attend the virtual USCHA Conference. NMAC will refund the difference.
  • Option 2: Transfer your registration to the 2022 USCHA in Puerto Rico.
  • Option 3: Cancel your registration and get a full refund.
  • Option 4: Donate your registration payment to NMAC.

If you need immediate assistance, please contact the Conferences Department at conferences@nmac.org. Raise any concerns directly with me, Paul Kawata. I am an old Asian queen who knows my value.

Wonderful Sponsors
This is not the USCHA that was discussed. NMAC hopes Sponsors will continue to support this important meeting and NMAC. These are scary times for all nonprofits, so please know how much we appreciate and need your support. Sponsors will get a call from Robert York. A new prospectus will be available soon. Thank you for understanding as we navigate these challenges.

Amazing Exhibitors
If you purchased an exhibit booth for the in-person conference, please let us know if you’d like to have a virtual exhibit or if you’d like to cancel your booth purchase. The virtual exhibit fee is $595. NMAC will refund the difference. If you’d like a full refund, then send an email to conferences@nmac.org by September 24, 2021. Thank you for your support.

Virtual Meeting & Presenters
Information about the virtual meeting will be posted shortly. We hope that most of the in-person workshop presenters are willing to switch to virtual. Presenters will get an email from Conferences offering you options for moving forward. You can expect the email by the end of August. If you can’t wait, then please email the wonderful Alison McKeithen.

Scholarship Applicants
USCHA will continue to give out scholarships, but now they will be for a virtual and not an in-person meeting. Since staff must address these other issues and the virtual meeting is being pushed back to World AIDS Day Adjacent, notifications about 2021 scholarships will be pushed back to October 1, 2021.

Hotel Cancellations
If you have made a reservation in the USCHA group block at the Marriott Marquis hotel they will automatically cancel your reservation and process refunds for any deposits.  Refunds will be issued in 4-6 weeks. It is not necessary to contact the hotel to cancel your reservation.

If you made a reservation OUTSIDE of the USCHA group block, you should contact the hotel directly to cancel your reservation.

Additional information about cancellations for the Courtyard hotel will be posted soon.

This was not an easy decision and probably no one is more disappointed than the board and staff of NMAC. I am truly sorry. Thank you for your continued support.

God is Love and Love is for Everyone,
Paul Kawata
NMAC

Paul Kawata

 

 

 

 

 

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