Open Letter To HIV Donors

Thank you for your decades of support. For all nonprofits, these are scary and difficult times. Now more than ever the HIV community needs our donors to stand with us. Without your continued support, the infrastructure created to provide services and to end the HIV epidemic could be decimated. There is natural inclination to hit “pause” to see where everything falls; however, it could be too late if you wait too long.

Last week the AIDS/LifeCycle was canceled. This is one of the nation’s largest HIV fundraisers. The AIDS Walk of New York is on May 17th and I truly wonder if it can happen. Without these and many other fundraising events, our infrastructure is truly at risk. We need all of our donors to understand that this is not the year to “skip” HIV.

Aids Awareness RibbonI don’t want to pit us against other nonprofits and diseases, because it’s going to be tough for everyone. That is why HIV specific donors are so important to our movement’s survival.  In the past year, we have seen an uptick in HIV service organizations having to close their doors, especially those who specifically serve racial/ethnic minorities. Given the economics of COVID-19, whole industries could go bankrupt in addition to our sister agencies. This is the trickle-down challenge for development. Marriott is going to have a very difficult year. They are a huge supporter of LGBTQ Prides; however, they just let Prides know not to count on them this year. While completely understandable, Marriott’s decision leaves us just starting to sort out the impact on nonprofits. Broadway Cares, a key donor to HIV services, can’t raise money when Broadway is closed.

Not all businesses will be equally impacted. The pharmaceutical industry could come out of this relatively unscathed. Even with the social isolation, people still need to take their meds, particularly people living with HIV. In fact, HHS is recommending that all PLHIV have a 90-day supply of their meds and stay updated on their vaccinations. NMAC is calling on HIV pharma, as one of the industries that will not be destroyed, to step-up and double their 2020 contributions to HIV organizations.

I know there will be some who will be upset about this request, but what is our alternative? Individual donors and mainstream corporations will be pulled in a million different directions and HIV will be one of multiple issues they must address. I don’t believe there is enough money from non-HIV funders to fill the gaps that COVID-19 will cause to our work.

To all of the HIV donors, thank you for your decades of support. If you believe there needs to be infrastructure to support people living with HIV, then stand with our movement and consider the following:

  • Double your 2020 giving
  • Give multiyear unrestricted funding
  • Simplify the application process, and
  • At least for now, minimize the reports that are required.

There will be a time when COVID-19 is a lesson for our history books and our movement will remember who stood with us during these difficult times. I am very concerned about what will be left when COVID-19 is over. We need your commitments now to weather the economic storm that is coming. Thank you.

Yours in the struggle,

Paul Kawata

Can We End An Epidemic In The Middle of a Pandemic?

Can we end an epidemic in the middle of a pandemic? These are scary and confusing times. It is understandable to hit the “pause’ button.

As we have seen, leadership plays a critical role in fighting any epidemic. Dr. Fauci at the many press conferences validates the importance of having a “trusted” voice. Hearing Ambassador Birx talk about long term survivors shows that lessons learned fighting HIV help to inform the response to COVID-19.

NMAC wants to thank and support all of our HIV colleagues who are being deployed to fight COVID-19. From healthcare providers to epidemiologist, there are many in our movement who are being reassigned and we thank them for their service.

How does our movement provide HIV services in the middle of the COVID-19 pandemic? What happens when COVID-19 infects a person living with HIV? Is there a special protocol for managing someone who has both viruses?

We don’t know the answers to these questions, but we are about to come face to face with that reality. There are 1.2 million Americans living with HIV. Given the many unknowns about COVID-19, it is reasonable to assume that some will also get COVID-19. Since nearly half of PLHIV are not undetectable, does that mean they are immune compromised?It’s time to get ready. While we might hit pause on ending the epidemic, we still have care and wrap around services that need to be provided. Agencies have a responsibility to protect their staff and provide services to people living with HIV who also have COVID-19.

Since many people will now be working from home, it is also important to learn from Long Term Survivors about the reality that isolation caused by the virus (either one) can lead to depression. As we think about how to work from home, please do not forget the behavioral health challenges. We are asking everyone to isolate themselves for an undetermined amount of time. This presents a multitude of issues. If interacting with people was the best solution to ending the social isolation,how do you do that in the age of COVID-19? There are real mental health issues that must be managed when putting people in isolation for extended periods of time.

There are lots of questions, but not a lot of answers. In the middle of these challenges, we are asking everyone to be leaders. To steady our movement, tell the truth, and provide hope. Please take care, I am very worried. When Dr. Fauci says it’s going to get worse before it gets better, I believe him. Hopefully this will be over soon. Unfortunately, it feels like it’s going to be longer than we first thought.

Yours in the struggle,
Paul Kawata

NMAC’s Principles and Values for Ending the HIV Epidemic

  1. Race Matters. HIV disproportionately impacts people of color. Race matters and should be prioritized when making decisions about programs, new hires, and leadership.
  2. Nothing About Us Without Us. HIV sits at the intersection of racism, HIV-stigma, homophobic, sexism, and transphobia. EHE efforts have a responsibility to “lead with community.”
  3. Health Departments Are Our Friends! Health departments have come a long way. Community works in most health departments so that sometimes it is difficult to differentiate between us.
  4. Thank You, Dr. Redfield, for Disruptive Innovation (DI). Dr. Redfield has embraced Disruptive Innovation.  We hope that everyone will embrace his vision. When the majority of PLHIV/AIDS are people of color, but over 75% of the people on PrEP are white, we have a problem.
  5. Prioritize People Living with HIV/AIDS. 400,000 PLHV/AIDS have fallen out of care. That is too many people. To keep them in healthcare and on meds for the rest of their lives, the HIV service mix must meet their needs as they age.
  6. Hire People From Communities Highly Impacted by HIV. EHE funds should translate into tens of thousands of new jobs. Hire people from the communities your efforts are trying to reach. Hire PLHIV/AIDS, transgender community, gay men, black women, hire people from communities that are highly impacted by HIV.
  7. Stop Combining the Transgender Community with Gay Men. We need real epi profiles to end the epidemic. Putting the transgender community in the same epidemiological data sets as gay men does not help our EHE efforts.
  8. Needle Exchange Works. While federal funds cannot be used to pay for needles, they can be used for the wrap around services that support needle exchange.
  9. Housing Is HIV Prevention. Stable housing is key to HIV prevention and care. Housing should be part of every EHE plan. Too many of the 400,000 PLHIV/AIDS who will be brought back into care will also need housing.
  10. STDs & Hepatitis. Our efforts to end the HIV epidemic must create meaningful linkages to STI and Hepatitis clinics. People with STDs or Hepatitis should be immediately educated and/or offered PrEP.

Last week HRSA announced $117 million in new funding for their Ending the HIV Epidemic (EHE) efforts.  It was a hard fight to get this money and NMAC wants to make sure that the EHE funds are spent correctly. Now is the time to advocate. Draft jurisdictional EHE plans will be reviewed by HHS, CDC, and HRSA by the end of March. Approval of the interim plans provide the roadmap for future funding announcements and new initiatives.

NMAC sent the following email to Health and Human Services (HHS), Centers for Disease Control and Prevention (CDC), and Health Resource and Services Administration (HRSA). “Dear Harold, Laura, Jono, and Eugene,

NMAC recently put together a series on Long Term Survivors and People Over 50 Living with HIV. Per our discussion, we want to make sure that the Mix of HIV services meets the needs of this aging population. Hire people living with HIV/AIDS as staff for ending the epidemic plans, particularly for programs targeting people with HIV.

As a follow-up to these pieces, NMAC is bringing in a delegation of 15 people who are over 50 living with HIV to Washington, DC to participate in AIDS Watch and to form an advocacy coalition that brings PLHIV/AIDS leadership to EHE work. We would like them to meet and talk with you.

People living with HIV/AIDS are critical to our efforts to ending the epidemic. Imagine what it would mean to hire them to support this work. To fully implement biomedical HIV prevention, the new money will need to hire thousands of people. Would’t it be wonderful if they were people living with HIV/AIDS? Not only is it the best pathway to the solution, it also sends a powerful message about the value and importance of PLHIV/AIDS.” Harold Phillips, Dr. Laura Cheever, Dr. Eugene McCray, and Dr. Jono Mermin have all agreed to listen and talk with a delegation of people over 50 living with HIV/AIDS.

The Partnership to End HIV, STDs, and Hepatitis, a partnership between AIDS United, NASTAD, NCSD, NMAC, and The AIDS Institute, is meeting with ADM Dr. Giroir (ASH), Dr. Fauci (NIAID), and Dr. Cheever (HRSA) to get updates on the EHE efforts and to discuss areas of collaboration. At these meetings, NMAC will share our values and principles. When are you meeting with your health department or planning council to advocate for your community? The money is just getting out and most jurisdictions are still working on their plans. This is the ideal time to build coalitions with other communities to come to the table. I know that everyone wants to do the right thing. Decades of collaboration have proven this point. We are much more powerful when we work together.

Yours in the struggle,

 

 

 

 

 

Paul Kawata

Black History Month – Mark Hughes

By Terrell Parker, NMAC Associate  Program Manager – History is best told by those who lived it. However, so much of the early history of Black people  in the movement has been shrouded in secrecy due to shame and stigma. This year, for Black History Month, we are exploring the Black community’s impact on ending the epidemic by highlighting the Black History makers in HIV Past, Present, and Future.

Mark Hughes is a 25+ year long-term survivor who currently lives in Indianapolis, IN. Mr. Hughes currently participates in NMAC’s Gay Men of Color Fellowship Program. Mr. Hughes has over 25 years working to end the HIV Epidemic as an advocate, program coordinator, support group facilitator, and former executive director.

Mark’s career accomplishments include leading Indiana’s Positive Organizing Project in which he developed a state-wide advocacy network of poz people of color and helped organize the first ever Indiana HIV Advocacy Day at the State House. In addition, mark has been the chair of the local Community Planning Group and Indiana Modernization Movement.

What made you join the fight? 
Me fighting for my life. I had a diagnosis of living with HIV. I knew there were no changes I could make to change my community. I joined the fight to receive services because we weren’t receiving the same services as everyone else. So we started our own coalition. Brothers Uplifting Brother and Brothers United. At the same time, there was a national movement as well. When we all came together. Black same-gender loving men.

Who were the leaders in HIV that you remember the most from the early days of the movement?
Phil Wilson. Mark Jacksinville, Jim Harvey from Chicago. We started the greater Chicago committee. It was the first work I did in HIV. We started all of that work in the kitchen. The agency and programs started in the kitchen. For same-gender loving men who were considered a social group at first, for parties. Then we added the education and conversation.

Is there anyone who you looked up to as mentor? 
Jim Harvey
Ron Simmons from Us Helping Us of DC
Derrick Hicks from Chicago
Roosevelt Mosely – Indiana
Alvan Quamin

What has changed the most about HIV from when you were first diagnosed to now?
Medications has been the biggest changes. States have made room at the table. We are in the rooms now. Before we weren’t. Back then, we were fighting just to get in the rooms.

In what ways have you been a part of history? 
Making change. Speaking up and advocating for programs that serve African American men. For the state of Indiana, I co-chaired the priority populations committee for our CPG (community planning group). When I did that, it was the first year CDC mandated that resources go to priority populations.

What is your biggest accomplishment working in the fight to end HIV?  
Bringing funding to agencies to do the work. Bringing our voices to the table and making sure we were represented in a time where our agencies were not getting funding. In the early days of advocacy, attending CDC round table discussions. We had been left out for so long, but we fought to have a place. And.. reaching the community. Reaching clients where they’re at. Letting them know everything will be alright. And letting them

What advice would you give to the next generation of leaders fighting to end HIV?
Participate! Be at the table. Be active. Be accountable… And stand up for your community!!

Hire People Living with HIV/AIDS

Our efforts to end the HIV epidemic must prioritize people living with HIV/AIDS (PLHIV/AIDS), particularly people who have fallen out of care and off their meds. Four hundred thousand Americans living with HIV have fallen out of care. Meds keep PLHIV/AIDS alive. We prioritize people who have fallen out of care because of the benefits to the individual and their community. Plans to end the HIV epidemic (EHE) must focus on retention in care. As we have learned, it is not a question of linkage, it is retention that is the challenge.

EHE plans need medical case management or patient navigators to both support people in care and to work with those who have fallen out of care. Hires in the past had challenges because these positions were usually classified as entry level positions. The people hired had little understanding about what it means to live with HIV. To end the epidemic, we need to honor the experience and hire people who live with HIV and AIDS day to day. Their lived experience should mandate a professional salary because this is a specialized skill and not an entry level position. Hire people who have a personal understanding of what it means to successfully live with HIV. This not only benefits the outreach programs it also helps the employee. Studies have shown that too many long-term survivors live with isolation that can lead to depression. Having a job is an important component to self-worth and value. Asking someone’s HIV status when hiring is illegal; however, allowing people to self-disclose is perfectly acceptable.

Not only do we need to hire people living with HIV/AIDS, we also need to make sure the new hires reflect the diversity of the local epidemic in terms of race, gender, sexual orientation and people with trans experience. Peer to peer outreach has always been shown to be the most effective way to  touch hard to reach communities. From NMAC’s perspective, who gets hired will make the difference between ending the epidemic versus staying the course with 40,000 new cases every year.

Building the infrastructure needed to end the HIV epidemic requires thousands of new hires to retain the 400,000 people living with HIV who have fallen out of care and the 900,000 more people needed on PrEP. This is the reason NMAC and many national partners have advocated for the hundreds of millions in new funding. The funding will only matter if jurisdictions, health departments, community based organizations, and health centers hire people who are successfully living with HIV and help them to translate that experience to their peers.

EHE plans should be the largest new employment program for PLHIV/AIDS. This is not about being politically correct; it is about creating programs that work. Trust is a key component to keeping people in care. You are more likely to trust people who have similar values and life experiences. Living with HIV is a very unique experience. It’s much easier to work with clients when you speak from personal experience when addressing the challenges of talking to your doctor, disclosing to your family and friends, taking meds on a daily basis, dating, sex, children, employment, and all the issues that impact daily life with HIV.

This doesn’t mean that people living with HIV should be limited to HIV care jobs. Any job with a living wage, career growth opportunity, and professional development opportunities should be open to and held by PLHIV/AIDS. But this particular area seems like a natural and logical fit for many PLHIV/AIDS.

Over the next weeks, NMAC is going to put together a sign-on letter to HHS, CDC, and HRSA asking them to review, evaluate, and update the HIV service mix to meet the needs of an aging population of PLHIV/AIDS. NMAC will bring 15 people over 50 living with HIV to AIDS Watch to both train and to make sure this important voice is at the table. While in Washington, NMAC will seek a meeting with Harold Phillips, Dr. Laura Cheever, and Dr. Jono Mermin to talk about all the issues, challenges, and opportunities that ending the epidemic provides for people living with HIV/AIDS. The administration may not fully understand the central role at PLHIV/AIDS play in ending the epidemic, so it is our movement’s responsibility to both educate and nudge them.

Yours in the struggle,
Paul Kawata
One of 33 founders of the National Association of People with AIDS

The Heterosexual Black Man: A Missing Key in Getting to Zero

As part of our recognition of Black History Month, we are pleased to present this special guest article written by Pastor André L. McGuire, BA, JD, of Hartford, Connecticut.

I learned that I was HIV-positive in 1994. It was the day after the President of the United States came to visit a church where I was the presiding officer. I had taken pictures with him. He autographed my bible (the only paper I had in the pulpit when he came). I woke up the next morning preparing to go to work. While in preparation my stomach became queasy, then I had the chills, next I had the sweats, then I thought I had to do number one. While I was trying to do number one it felt like I had to do number two. My body went through this entire cycle at least two more times in rapid succession. I went into the kitchen and told my wife that I needed her to take me to the doctors.

She said she would take me to the doctor with whom she had grown up. I said no, I wanted her to take me to the hospital as I had gone to that doctor several times since I broke out with poison oak. He helped with the poison oak. However, after that I began to get a cough and he would prescribe an antibiotic. It would go away for a short time before returning after a week or so. That recurred about three times in a few months span. I felt as if these new issues were a bit more than he would be able to handle. She took me to Elizabeth General Hospital.

When I came to the ER the doctor took my vitals and within what seemed like five minutes I was being admitted to the hospital. The doctor said he did not know how I made it to the hospital as my left lung was three fourths filled with fluid. I was begun on a high dose of Bactrim to dry up the fluid. After a day or two I began to have a fever of over 103 which persisted for some days. They were unable to break the fever with the prescribed medication and after a while a doctor came and asked if I minded him taking several blood tests. One of which was for HIV. I felt as if I were going to die at any moment so I consented.

The doctor came to give me the test results. He stated I tested positive for AIDS. He stated some astronomical number for the amount of virus in my blood. My greatest blessing was that I had been developing a relationship with Jesus Christ over the prior two years. It was my blessing because when others learned of this disease, while they thought life was over, I had hope. I remembered that, “He which had begun a good work in me would continue it until the Lord Jesus come”. I remembered that because while in the midst of the fever and thinking I was dying, I began to look out the window to see if Jesus was coming. When I did not see him though I was in pain I knew I would be alright.

It also helped that I knew nothing of AIDS, so I asked the doctor what I needed to do. I was told he would prescribe medication for me and that I should take it as prescribed and go see another doctor. I know now that I was also blessed to have been in my own business and to have had my own insurance. I knew how I had received the virus. I had come out of a life style made worse by a substance use disorder with something for which I had not accounted, AIDS. Thank God the virus was undetectable in me for a long time as though we had no proof we now know that undetectable is untransmittable.

I grew up living an extremely promiscuous life. In my neighborhood it was sort of a rite of passage to be sexually active. Unfortunately, many of my crowd based their manhood on how many women they could have. I came to learn that when my first love cheated on me I was hurt so much that I did not want to experience that pain again. As a result, due to a complete lack of coping skills for dealing with emotions, I cheated on every woman that I had after that until I came to develop a life in Christ. Sadly, even then I did not develop coping skills for emotional issues. I did however commit to following God. Between following God and enhancing my relationship with him through the fellowship of Alcoholics Anonymous I did well, for a time.

I eventually was called to Pastor a church and life became very busy as I strove to serve God and man. I was so busy that without being aware I stopped going to AA meetings. I was blessed to go on Missionary trips to Uganda in East Africa and Ghana in West Africa. The church I pastored grew so much that we had to purchase a new edifice. While taking on pastoral responsibilities, I became the contractor in redoing the new building and essentially the realtor in the sale of the old; the architect behind developing a food pantry; the webmaster of the church’s website; a husband and Father of what I thought was six, which in fact were seven; all of that even as I flirted back and forth professionally to earn enough money to care for our family as we took our annual vacation to Canada and then to Florida or Alabama to see my grandmother.

Many things unchecked can devolve into obsessive compulsive behavior. I recognized that God had called me to write a number of books. I had the content in my head yet I never found time to actually write the books. When this obsessive compulsive mind had gone unchecked for some years it eventually became weak. I found myself in prison with no capacity to return to my professional life. Having nothing except God I wrote the five books God had placed within me. I have been blessed financially to be able to publish one, “The Revealing of a Godly Man.”

I came out of prison in 2010. I found myself without money and no relatives in the state of Connecticut. I found myself in church basements asking for money to get clothes. I had to rely upon the state to provide food stamps and the charity of people and agencies for personal hygiene items and a roof over my head. I began to see another side of the AIDS epidemic, the side where many are completely without resources and have to depend upon the state and public charity to survive. Having three degrees and a vast array of knowledge in a number of areas I was unable to find employment for a period of five years.

Thankfully, I began this process with God, as the hope I had in Him kept me. I cried in my room many nights. My job was to find a job. I also made myself available to organizations trying to help persons in my situation. I became a member of the Connecticut HIV/AIDS Planning Council. I met the Greater Hartford Ryan White Planning Council Program Director who asked why I was not a part of the planning body where I lived. I joined. I eventually came to be co-chair of each group and my term was extended another term in each capacity. It was odd though that everyone else was able to get employment earning a fair wage, yet I was turned away as I had a criminal past which no one wanted to deal with.

I began to realize that each time I opened my mouth, because I was the only Black male heterosexual, my views were passed over until someone else stated the same thing. I began to realize that issues confronting Black male heterosexuals were being ignored as no Black male heterosexuals were at any tables or on any executive boards where decisions were being made. I even learned that many who may have experienced hardship at the hands of Black male heterosexuals seemingly never dealt with their issues and, as a result, they treated me as if I were the one who had harmed them. I recognized that once it was realized that my statements generally came from the statistical data supplied by DPH or CDC then I became the angry Black man who was asked to change the tone of his voice though God has only given me one voice with which to speak. I found that although there were a great number of Heterosexual Black men living with HIV/AIDS, I was the only Black male heterosexual everywhere I went within HIV planning and prevention development bodies as well as training opportunities.

I listened to conversations regarding the Denver Principles and statements like “nothing for us without us.” I saw how when this disease was first known it was dubbed the gay man’s disease. Until a little boy, Ryan White, became afflicted with this disease no one was willing to fund it and those with whom this disease lived were ostracized, marginalized and even abused on every hand. I saw how the Denver Principles and statements like “nothing for us without us” empowered a people to ACT UP until they became a part of the solution.

I sit today writing this article as a Heterosexual Black man wondering why the Heterosexual Black Man is now being ostracized, marginalized, and abused by people who should know better; why, since this disease has browned, those same principles and statements do not apply; why I am not permitted to be a Black Male Heterosexual, accepted as God has created me. I do not have to look and act like someone who I am not in order for us to fight this fight together. All I need to know is that, as a Black Male Heterosexual, I am at the bottom of every food chain and the top of nearly every STI and/or chronic disease listing.

We speak about Getting to Zero as we ignore Heterosexual Black men. We say that we are addressing HIV in the Black community by dealing with Men that have Sex with Men (MSM) and Black women. I see statistic after statistic that places the heterosexual Black man in a category leading the pack in many chronic diseases and with most STIs I see that Black women who will be 70% of the women in this country who are likely to get HIV/AIDS and 70 to 75% of those who have contracted this virus state they got it from a heterosexual Black man.

I have heard many pay lip service to bringing heterosexual Black men to the table or even to desiring to hire them. Then they quickly retreat to “if he did not have that record I could help.” The crime, the voice, and nothing else prevents people from receiving payment for treatment and provision of services to heterosexual Black men. If you are responsible to having a staff that reflects the demographic you serve, why are there no heterosexual Black men? Why do you refuse to hire felons as you complain that others won’t hire them?

We are unable to come to a solution to our problems because we refuse to allow the crowd, those with solutions, those who are at risk and creating risk to come to the table and when we do we refuse to hear their voice. We cannot be driven by the ideas which have brought us to where we are. We must be driven by “Nothing for us without us” by our participation in providing solutions to our problems. Truly, there can be nothing for us without us.

I am continuing on this battle field in spite of those who do not want to hear, because if those who have a voice stop speaking then what will happen to those who have not found their voice? I am on the Greater Hartford Ryan White Planning Council and the Martin Luther King Corridors Initiative in New Britain, Connecticut where I am blessed to chair the Economic Development Committee. Our committee is in the process of developing a Comprehensive Employment Center that we might assist with housing and employment for those with substance use, homelessness, and re-entry issues (the major issues affecting many men of color with whom HIV/AIDS happens to live). I am also a part of a group preparing a Summit on the Health of Black men and boys in the state of Connecticut and I am willing to bet its implication will extend to many other states. So save the Dates of June 10, 11, and 12 of 2020. If you are desirous of attending the event or are in a position to be of assistance with either endeavor please reach out.

Many Blessings and Peace

How To Make The HIV Service Mix Work for Long Term Survivors!

New funding for Ending the HIV Epidemic (EHE) efforts are an opportunity to expand and develop new “disruptive innovation” of programs and services. This expansion is critical because the majority of People Living with HIV/AIDS (PLHIV/AIDS) are living longer, something that was not an option when the service mix was first developed. EHE plans from the 57 target jurisdictions must include comprehensive wrap around HIV services for older PLHIV/AIDS, and PrEP for older sexually active individuals who have sex with people from communities highly impacted by HIV.

According to Health In Aging, we must focus on the Geriatric 5Ms:

  • Mind — Maintaining mental activity, treating depression and anxiety, while understanding the impact of a loss of meaning and purpose all go into mental wellbeing. Also isolation is huge unmet issue.
  • Mobility — Preventing frailty and staying active
  • Medications  — polypharmacy (taking multiple medications) and adherence
  • Multi-Complexity — Managing a variety of health conditions
  • Matters Most — Ensuring a person’s individual, personally meaningful health outcomes, goals, and care preferences are reflected in treatment plans.

While these principles apply to geriatric healthcare in general, can they also be applied to an aging PLHIV/AIDS community and sexually active older Americans? Geriatric HIV medicine is a brand-new field that seemed impossible in the early days. We need to know how HIV might impact arthritis, heart disease, diabetes, or dementia. What is the impact of taking HIV meds combined with medications for high blood pressure, high cholesterol, or dementia? If we are going to end HIV, the mix of HIV services must be adapted to meet the needs of an aging population.

In 2015 the CDC estimated that 47% (454,685) of Americans living with HIV were 50 and older: 38% were aged 50-54, 29% were 55-59, 18% were 60-64 and 16% were over 65.

As of 2020, the CDC estimates that there are 770,000 adults over 50 living with HIV/AIDS in the US. That’s 70% of all people living with the virus with estimates that 24% of PLWHA have lived with the virus since before 1996. While some of the aging issues overlap there are differences that matter.

At NMAC, we are particularly concerned about the intersection of race and aging. Older black and Latinx people are more than twice as likely to not have supplemental Medicare insurance as their white counterparts. Black Medicare beneficiaries have higher levels of morbidity than their white counterparts. They also report lower levels of office visits and more inpatient, emergency room, and nursing home visits. Given the racial demographics of HIV, not only do we have to address issues of aging, but also the impact that race plays on aging with HIV.

As I mentioned multiple times, Dr. Redfield has recommended using disruptive innovation to solve the challenges within EHE plans. Since we need to keep PLHIV/AIDS in care and on meds for the rest of their lives and the majority of this community are over 50, EHE plans must comprehensively address this challenge. NMAC recommends the following:

  • EHE Plans must explicitly address the HIV service mix for older PLHIV/AIDS
  • When CDC/HRSA/HHS do joint final reviews of the G-57 plans, they must ensure comprehensive geriatrics HIV services are included in every plan.
  • HRSA/HAB need to develop a list of services that all Ryan White providers should make available to serve the aging HIV community.
  • CDC should ensure that a portion of the PrEP programming specifically outreaches to sexually active older Americans, especially people who have sex with folks from communities that are highly impacted by HIV.
  • SAMHSA should put together a strategic plan to address the mental health issues facing long term HIV survivors.
  • HUD should create a list of geriatric HIV components to be built into all HOPWA housing and the entire HUD portfolio.
  • All plans to EHE must look at the intersection of aging and race.

The biomedical solution to ending the HIV epidemic is complex because it needs to speak to very specific communities with very specific needs. There is not a generic one size fits all solution. HIV Long-Term Survivors—women and men living with HIV for over 30 to 40 years face unique challenges not shared by people who acquired HIV after 1996 or so. What I appreciate most about the administration’s EHE plan is that it leaves the power with the jurisdictions. They get to determine the priorities and solutions. NMAC hopes they will use the new funding to build a comprehensive mix of HIV services that both reaches communities that were missed in previous efforts and speaks to the communities that are living longer with HIV/AIDS.

To achieve the latter, the HIV service mix must prioritize older PLHIV/AIDS and sexually active older Americans who could benefit from PrEP. Older people in the United States are more likely than younger people to have late-stage HIV infection at the time of diagnosis, which means they start treatment late and possibly suffer more immune-system damage. Late diagnoses can occur because health care providers may not always test older people for HIV infection.

I know we don’t want to think about grandma having sex, but all you have to do is look at the rising STD rates for people over 55 (according to the CDC, gonorrhea rose 164% among American over 55 from 2014-2018, while cases of syphilis rose 120% and chlamydia rose 86% for this community) to see that she is having a good time.

Yours in the struggle,

Paul Kawata
Learning and Struggling To Be Proud Senior Citizen

Paul Kawata

HIV 50+ Co-Morbidities and Aging Related Health Challenges Living with HIV

NMAC and Kelley Drye Team Up to Support the Fight Against HIV

Washington, D.C. – 13 February, 2020: NMAC announced today that it has entered into a partnership with the law firm of Kelley Drye & Warren LLP. The firm will provide pro bono assistance alongside NMAC’s Government Relations and Public Policy department as well as help to support other government and policy-related issues for the association.

NMAC Leads With Race Logo“We are so pleased to have this agreement with Kelley Drye,” said Paul Kawata, Executive Director for NMAC. “As we proceed with the federal plan to end the HIV epidemic, we will face numerous challenges in securing the necessary funding, ensuring that all communities are included in the plans, and fighting against any policy decisions that would hinder the plan’s success. Kelley Drye’s reputation and resources will be an invaluable asset to NMAC as we move forward. I look forward to working with them.”

This new partnership will help to strengthen NMAC’s presence on Capitol Hill and allow for sustained outreach to both sides of the aisle. Kelley Drye’s extensive network will provide NMAC with increased access to policy makers, regulators and government officials.

“Kelley Drye has a long history of providing quality pro bono legal services in our communities,” said David Frulla, partner Kelley Drye. “We look forward to working with NMAC and applying our experience to the fight against HIV.”

The partnership comes at an opportune time, as the President’s recently unveiled budget request for FY 2021 includes $761 million for the federal plan to end the HIV epidemic.

Founded in 1836, Kelley Drye & Warren LLP has provided legal counsel carefully connected to our client’s business strategies and has measured success by the real value we create. As part of its commitment to advance the public good, Kelley Drye has a long history of providing quality pro bono legal services in each of the communities in which it practices. Our lawyers recognize that providing quality pro bono legal services improves our system of justice by ensuring that the client’s position is presented clearly, concisely and cogently within the legislative, executive and judicial branches. Find out more by visiting www.kelleydrye.com.

NMAC leads with race to urgently fight for health equity and racial justice to end the HIV epidemic in America. Since 1987, NMAC has advanced our mission through a variety of programs and services, including: a public policy education program, national and regional training conferences, a treatment and research program, numerous electronic and print materials, and a website: www.nmac.org. NMAC also serves as an association of AIDS service organizations, providing valuable information to community-based organizations, hospitals, clinics, and other groups assisting individuals and families affected by the HIV epidemic.

Black History Month – Dr. Joyce Turner Keller

By Terrell Parker, NMAC Associate  Program Manager

History is best told by those who lived it. However, so much of the early history of Black people  in the movement has been shrouded in secrecy due to shame and stigma. This year, for Black History Month, we are exploring the Black community’s impact on ending the epidemic by highlighting the Black History makers in HIV Past, Present, and Future.

Dr. Joyce Turner Keller is a 68-year-old HIV-positive woman, who resides in Baton Rouge, Louisiana.  She is the Founder & CEO of ASPIRATIONS, a nonprofit HIV service organization, and an artist, advocate, community organizer, motivational speaker, writer, actress, producer, and director.  She has served as CEO of Positive Diva and Positive Dude Productions, and Spiritual Leader of the Travelers Of Christ Evangelistic Ministry for 53 years.

What made you join the fight? 
After I was diagnosed with AIDS in November of 2001, I thought it was critical that my community should see someone like me publicly living with and speaking out about the a pandemic of new infections and the risk of becoming HIV-positive. I wanted them to know HIV did not ask for a resume.


Who were the leaders in HIV that you remember the most from the early days of the movement?
The leaders I remember in the early days of my fight are Myron Solomon, Shirley Lolis, A.J. Johnson, Phill Wilson, Frank Oldham, Paul Kawata, Charles King, Larry Bryant, William “Bill” Arnold, Christopher Bates, Nancy Wilson, and Eugene Collins.

Is there anyone who you looked up to as a mentor? 
A. J. Johnson of BRASS , William “Bill” Arnold, Frank Oldham, and Circe LeCoompte
 
What hadschanged the most about HIV from when you were first diagnosed to now?
The local activity is not as visible and events are not as plentiful.  The message of advocacy is not supported as strongly.

In what ways have you been a part of history? 

I am a part of the History of HIV as a visible advocate. I use art, community organizing, and theatre to address stigma in churches. As a minister I am inclusive of all genders, race, and religion.  I am a part of History because of my written and spoken words of injustice and discrimination.

What is your biggest accomplishment working in the fight to end HIV?  
My biggest accomplishment working to end HIV is helping to eliminate stigma, educate and test for HIV, share my experience as a professional, heterosexual minister and Black woman, and have my voice heard on a global level in PSAs and documentaries.

What advice would you give to the next generation of leaders fighting to end HIV?
The fight to end HIV will take all of us.  I will tell the next generation that they are a value that cannot be compared to any other source, for we need their vision and passion to move forward and win this war.