50+ Mini Grants Bring Results

HIV 50+ - Strong & HealthyEach year, NMAC awards mini grants to members of the 50+ Strong & Healthy Program to plan and implement HIV education programming or social activities for long term HIV survivors. This year’s mini grant recipients included:

Bryan Jones and Michelle Jackson-Rollins, Garden Valley Neighborhood House, Cleveland, OH

Sankofa Self-Advocacy Retreat- Brought those aging with HIV together with other generations of those living with HIV to gain education and self-care while learning to interact on a personal and professional level.

PLWHA over 50 were paired with a younger PLWHA and throughout the retreat participants attended workshops, social activities, and told their personal stories. The retreat was held from April 12-14, 2019 at the Stanford House in the Cuyahoga Valley in Peninsula, Ohio.

Christine Kapiioho, Maui AIDS Foundation, Waiuku, HI

“Healthy Living for 50+ HIV Individuals” was a half day event focusing on two topics (Nutritional supplements and acupuncture). The event was held on March 30, 2019 at the Maui AIDS Foundation in Wailuku, HI.

Debra Parmer, Northeast Ohio African American Health Network, Arkron, OH

Celebration of Life Workshop and Evening Dinner was a one-day, eight-hour workshop held for people aging with HIV/AIDS. The workshop was held on Saturday, February 16 in Akron, Ohio. Participants learned information concerning advances in HIV treatment, avoiding the development of co-morbidities such as diabetes, cholesterol and high blood pressure by ensuring good dietary and physical fitness habits are practiced as a means of prevention. Participants also enjoyed an evening of fun activities including line dancing, exercise and soft tissue massages.

Janice Shirley, Carolina Care Partnership, Charlotte, NC

“Thriving at 50+” brought together different agencies to empower individuals living with HIV and over the age of 50. The program held seven workshops over the course of six months focused on topics such as medication management, exercise, nutrition, mental health and finances. The workshops were held at the Carolina Care Partnership in Charlotte, NC.

Jared Hafen, Utah AIDS Foundation, Salt Lake City, UT

Positive Force: The Reunion is a social support group for people over 50 years old who are living with HIV. This event was held on Saturday, February 23, 2019 in downtown Salt Lake City, UT. Participants mingled with their peers and learned coping strategies around HIV. Positive Force was established in 2016 as a social group for people living with HIV over 50 years old. It is an active group with over 80 members.

Kneeshe Parkinson, Positive Women’s Network (PWN-USA), St. Louis, MO

IMPACT Party: Strong and Healthy included interactive workshop sessions to enhance, educate and empower the lives of those HIV+ 50 diagnosed with HIV/AIDS to eradicate STIGMA and improve quality of life with a meaningful impact. Workshops focused on “living your best life” and social activities such as painting and a head wrapping demonstration. The workshops were held from January to April 2019 in Saint Louis, MO.

Michele Princeton, AIDS Taskforce of Greater Cleveland, Cleveland, OH

50+ Positive Change Two-Day Retreat provided participants insight for living and surviving with HIV and related challenges. It also provided opportunities to connect socially and emotionally with others in similar situations. The retreat offered structured workshops, panel discussions, dancing and lunch and learn activities. The retreat was held on March 15-16, 2019 in Cleveland, Ohio.

Nancy Shearer, Special Service for Groups, Inc./ APAIT, Los Angeles, CA

Spring Social: Bringing Older Adults People Living with HIV (PLWH) Together was a multi-component program focusing on Addressing Social Isolation among adults ages 50 and over living with HIV, identifying as heterosexual. During this event, individuals were able to share their stories, learn best practices for their health and well-being and build their social network. The Spring Social was held on March 23, 2019 in Los Angeles, CA.

Robert Cornelius, Cempa Community Care (Chattanooga CARES), Chattangooga, TN

The Survivors Network program connected those individuals living with HIV over the age of 50 to education and resources needed to learn valuable life skills. The program had five sessions held from January to May 2019 filled with sharing stories, how to address stress and isolation, and learning about HIV drug resistance.

Patricia Kelly, Carla Rose Foundation for a Family Affair, Orangeburg, SC

Raising our Awareness and Representation (ROAR) was a two-day retreat aimed at bringing together women living with HIV. Women from South Carolina and Georgia attended the retreat from February 22-24, 2019. Session topics included how to address grief and loss, living wills and power of attorney, and mental health. The retreat also included fun social events such lunch socials and open discussions.

Angel Luis-Hernandez, Ministerio en Jehova Seran Provistos, Arecibo, PR

Foro Communitario Lo Mejor de Nosotros: 50+ Positivos, Fuertos y Saludables facilitated a working experience for two scholars to be mentored in event coordination skills for developing a community forum on HIV and aging. The scholars were mentored by the organization and the event was held on April 5, 2019 at a nearby restaurant. It was a successful three-hour event where the social, clinical and social and psychological aspects of HIV and aging were discussed.

Teresa Sullivan, Philadelphia FIGHT, Philadelphia, PA

We are Stronger Together Building an HIV 50+ Alliance is a series of workshops and educational events created for the HIV 50+ population. These workshops were held from January to April 2019 in Philadelphia, PA. The attendees were recruited from the pilot TEACH (Treatment Education Activists Combating HIV) Alumni group. Workshops included social events (such as self-love and karaoke), mental health workshops, and a health fair.

Michael G. Smith, New Mexico Coalition to End Homelessness, Santa Fe, NM

Phx Rising: 2.0: Work, Financial Stability, and Aging with HIV/AIDS created a website to address issues related to Work, Financial Stability, and Aging with HIV/AIDS. Michael Smith worked with a volunteer to do service provider focus groups and analysis to improve the website. A report was submitted with recommendations for re-design of the site.

Miguel Delgado-Ramos, COSSMA, Inc., Cidra, PR

“VIHVIENDO Fuerte y Saludable”/ “Living Strong and Healthy” was held on May 3, 2019 at the Morivivi Hall of the Four Points Hotel in Puerto Rico. The event had 4 sessions focused on Emotional Health, Physical Health, Finance and process of creating a support group. The event was very successful and created an interest to develop a support group with participants who attended.

Esther Ross, Circle of Friends Task Force, NC

The LAMPS (Leaders, Advocating, Mentoring, other leaders for Personal Growth and Support) Project educated 5 persons of color living with HIV (POCLHI) using the Building Leaders of Color (BLOC) curriculum. Trainings were held from February to May 2019 and included BLOC modules on the Ryan White program and leadership, review of GIPA/MIPA, and transformational leadership.

2020 USCA Oct 10-13, 2020 San Juan, Puerto Rico

The United States Conference on AIDS is proud to announce our 2020 meeting will be in San Juan, Puerto Rico on October 10-13. NMAC is going to San Juan to bring A) much needed economic development, B) highlight HIV in the Latinx community, and C) to experience a city where English is the second language.

 

On September 20, 2017 Hurricane Maria struck Puerto Rico and devastated the island. Eighteen months later, they still need economic development. According to the San Juan Convention Bureau, “USCA will provide jobs for over 1,000 people during the week of the conference.” Tourism is the lifeblood for the region; however, people have not returned in the same numbers. Like NMAC did after Katerina, USCA is going to the island to support our friends and the economic development of the region. We expect everyone from New Orleans to show-up and show-out for their colleagues in San Juan.

Prior to selecting San Juan, NMAC confirmed with HRSA and CDC that their grantees could attend. The agency appreciates their support. Since San Juan is one of the prioritized jurisdictions, it’s a great opportunity to learn about their plans to end the epidemic. The meeting was delayed until October 10-13 to be away from the peak of hurricane season.  New 2020 Program Partners include the Latino Commission on AIDS and the Prevention Access Campaign.

According to the CDC, Latinx gay men passed white gay men with the second-highest number of new HIV diagnosis in 2016. 7,689 (29%) Latinx gay were diagnosed with HIV in 2016 compared to 7,392 (28%) for White gay men and 10,226 (38%) for African American gay men. This report did not list the numbers of gay American Indians, Alaska Natives, or Pacific Islanders. The number of people living with HIV in the transgender community are included with gay men; as a result, there is not a clear picture of the impact of HIV on the Latinx transgender community.

2020 USCA will focus on language and culture and their impact on retention in healthcare and adherence of meds. USCA attendees will be part of a community where English is the second language. The conference will offer some workshops only in Spanish. Like some clients, attendees can experience what it means to have limited understanding of the discussions.

NMAC wants to thank the activists and community-based organizations on the island. We did not want to add to their burden, so the decision to hold USCA in Puerto Rico was ultimately theirs to affirm. Overwhelmingly, they voted “yes” to bring USCA to San Juan, not only for economic development, but also to raise the visibility of HIV in this priority jurisdiction.

 

The Conference will be held at the Puerto Rico Convention Center. While USCA does not typically use convention centers, it was the only space that could hold the meeting. The main conference hotel is the Sheraton Puerto Rico. In addition, we have rooms at the Caribe Hilton. Many people have fond memories of this hotel. Unfortunately, it was destroyed in the hurricane. The Caribe Hilton just reopened on May 15.

For some, getting to Puerto Rico will be a big sacrifice. Thanks to our constituents from Hawaii, Guam, and the Pacific Islands. NMAC appreciates your continued commitment and support. Puerto Rico is part of the United States, but some jurisdictions think it’s foreign travel. Please feel free to ask for an invite letter to justify your attendance. USCA has the opportunity to bring economic development to a community in need, learn about the HIV epidemic in the Latinx community, and experience a city where English is the second language. Gracias.

Yours in the struggle,

 

 

 

 

 

Paul Kawata
30 Years of Service
This photo of me and Rafael Acosta was taken at a reception that Jose Toro and the Fundacion Sida de Puerto Rico hosted for NMAC in Old San Juan.

Ending the Epidemics in Their Memory

Our movement is about to come full circle as we build plans to end the HIV epidemic and hopefully the syndemics of STDs and hepatitis. We stand on the shoulders of heroes who fought an unknown virus. The lessons learned during the plague years formed the foundation and strength of our work. To memorialize their courage and sacrifice, the theme for the 2019 United States Conference on AIDS is Ending the Epidemics in Their Memory.

It is impossible to fully describe the early years. Those unspeakable times became part of the DNA in our movement. We learned to fight back because nobody would take care of our friends. Food was regularly left outside of hospital rooms, funeral homes refused to cremate our partners, and the list goes on. These harsh lessons taught us that the fight against the virus was also a fight for civil rights, equality and justice.

As we build plans to end the epidemic, USCA honors and remembers the leaders who made this moment possible. Leaders like Craig Harris, one of NMAC’s founders and our first board chair.  In 1986 Craig jumped onto the stage of the American Public Health Associations’ first plenary on AIDS because all of the speakers were white. He grabbed the microphone and said, “I will be heard.” NMAC, like many HIV organizations, started as a protest to the unfair and unequal treatment of communities highly impacted by HIV. We lost Craig early in the epidemic, but his vision for racial justice is still core to NMAC and hopefully all of our work to end the epidemic.

Who was your Craig Harris? Who was the person that exemplified strength and courage in the face of great adversity? USCA wants to honor their names. As we build plans to end the epidemic, it is important to remember that our work is rooted in struggle, discrimination, prejudice, and hate. This is an epidemic that mostly impacts people on the margins of the mainstream. Our work was never about soccer moms, but we are thankful for their support.

This year’s USCA will have two walls with the names of leaders we lost in the struggle; leaders who were the “sparks” that ignited your agency or community. Our online only program book will tell their stories. Unfortunately, there are too many heroes and too many stories that are forgotten. USCA is collecting names, photos and stories of heroes in the struggle. Please email this information to communications@nmac.org by June 21 to be included on the wall and in the online program book.

Our movement is extremely diverse, but sometimes our history gets written from limited perspectives. Please help NMAC document the diversity of stories and leaders in our movement. We hope to hear from middle and rural America, people of color, the transgender community, the South, women, youth, elders, drug users, and LGBTQ communities because they are all key to our efforts to end the HIV epidemic. We are writing history. Let’s remember the courage and strength of the heroes who are gone too soon. Their lives form the foundation for our work and commitment to justice, equality, and civil rights.

Also, don’t forget that the Early Bird Registration rates for USCA end THIS Friday! Register now and don’t miss out on the lower rate!

Yours in the struggle,
Paul Kawata
30 Years of Service

$30 for 30 Years

2019 is my 30th Anniversary as the executive director of NMAC (formerly known as the National Minority AIDS Council). Nobody lasts 30 years in the same job anymore. I am a relic of the past and a symbol of the commitment of a generation of leaders who came of age during the early days of the epidemic. Please celebrate my 30th Anniversary by making a donation to NMAC for $30, $300, or $3,000. Your support will help build NMAC’s Center to End the Epidemic.

I came to Washington DC in 1985 to fight an epidemic. It was the start of President Regan’s second term. Margret Heckler, Secretary of HHS, said that we would have a vaccine in five years. I left my family and friends and moved across America not fully understanding how my life would change.

While I have a big imagination, no one could have dreamt of HIV. The horrors of the early days still haunt my dreams. I was just a kid, but I had to grow up quickly. Visiting hospitals, planning funerals, and trying to wrap my brain about a virus that was killing my friends and lovers. That would be my life until 1996 when I attended Dr. David Ho’s seminal lecture on Protease Inhibitors at the International AIDS Conference in Vancouver. Combination therapy moved HIV from a death sentence to sometime more manageable; however, let’s not pretend living with HIV is easy.

We are about to attempt the impossible: to end an epidemic without a cure or vaccine. For those of us who were part of the early days, this is a full circle moment. NMAC needs your support to be the leaders our movement needs. To speak truth to power requires nongovernment money. Please help me celebrate my 30th Anniversary with a gift of $30, $300, or $3,000. It is my honor to be NMAC’s executive director.  Thank you for being part of this journey.

Yours in the struggle,
Paul Kawata
30 Years of Service

 

 

 

 

 

 

 

U=U vs. TasP

Undetectable equals Untransmittable/U=U vs. Treatment as Prevention (TasP). One has captured the imagination of people living with HIV (PLWH) around the world while the other seems to have disappeared. U=U was created by community to empower PLWH to have an undetectable viral load so they can’t transmit HIV. TasP was created by scientists to explain how HIV treatment is also HIV prevention.

This difference matters because we are about to build multiple pathways to end the epidemic. Do we listen to community or should the pathways come from scientists? Too often community is dismissed. Getting the federal government and scientists to go along with U=U was a fight. Thank you Bruce Richman for leading the charge.

However, U=U needs private health insurance, the Affordable Care Act, Medicaid, expanded Medicaid, or Ryan White services to be effective. Without continuous and sustained access to healthcare and meds, none of our efforts to end the epidemic will work.  That is why HRSA’s HIV/AIDS Bureau (HAB) will play such a critical role.

Ending the epidemic means retaining PLWH and people on PrEP in healthcare and adherent to meds for the rest of their lives. We know the desired end result; however, agencies don’t know what programs to implement because these communities have eluded previous efforts. So far, PrEP is not reaching communities of color. Four hundred thousand PLWH have fallen out of care or are unaware of their HIV status.

Programs to end the epidemic must not only be scientifically accurate; they also need to retain 1.1 million Americans on PrEP and keep 1.2 million PLWH in healthcare and on meds for decades. Failure to reach scale is the main reason previous efforts failed: we could not reach enough people to get the scale needed to bend the curve of new HIV cases. While 2.3 million people can seem daunting, it’s not like previous effects that needed to work every time anyone has sex. I’m just saying.

To be clear, I’m not saying that community is always right. I just don’t want us to be dismissed out of hand. This year’s United States Conference on AIDS will celebrate U=U and community. Working with the Prevention Access Campaign, USCA is committed to a plenary on Saturday, September 7 that will inspire and educate about the central role community must play.

Now is not the time to reinvent the wheel. Let’s use community to shape best practices for reaching populations hard hit by HIV. Those communities must include gay men, particularly gay men of color, specifically black and Latinx young gay men, the transgender community, black women, Latinas and drug users. These communities are stigmatized, discriminated against, and bullied. Too many are forced to live in the margins of our society because they are different. Their access to healthcare, housing, and employment can be tenuous. While being very careful to not further stigmatize, we need to understand and directly address the realities of their lives. Given all these variables and the complexities of being different in America, how do we also get these folks to stay in healthcare and on meds for the rest of their lives because that is what it will take to end the HIV epidemic in America. Obrigado.

Yours in the struggle,

Paul Kawata
30 Years of Service

 

 

 

 

 

 

 

 

The House Roars

Most of us never read congressional committee reports; however, a subcommittee of the House Appropriations Committee (then click on FY2020 Bill Report) wrote language that could change the course of the HIV epidemic in America. We still have an uphill battle in the Senate. NMAC is very concerned about the Budget Control Act caps. Below is the actual language (in boxes) from the House report, starting on page eight of the 346-page report.

 


HIV INITIATIVE

The Committee invests in a new HIV initiative to reduce transmission of HIV by 90 percent in the next 10 years. The bill includes an increase of nearly $500,000,000 for HIV research, prevention, and treatment—almost twice the size of the increase requested by the Administration.

The bill includes an increase of $170,000,000 for HRSA programs—including Ryan White and Community Health Centers—to increase the use of pre-exposure prophylaxis (PrEP) among people at high risk for HIV transmission and to increase the use of antiretroviral therapy (ART) for individuals living with HIV.

The bill also includes $140,000,000 for CDC activities to diagnose people with HIV as early as possible after infection, link people to effective treatment and prevention strategies, and respond rapidly to clusters and outbreaks of new HIV infections. There is also an increase of $16,919,000 for School Health-HIV and an increase of $17,000,000 for the Minority AIDS Initiative, a cross-cutting initiative to improve prevention, care, and treatment for minority populations disproportionately affected by HIV.

Furthermore, the Committee rejects the Administration’s proposal to cut NIH’s HIV research budget by more than $400,000,000. Instead, the Committee continues to invest in research that led to breakthroughs in current treatments such as PrEP and ART. The bill includes an increase of $149,000,000 for NIH to continue funding research that could lead to an HIV vaccine or a cure.


NMAC and the Partnership to End the Epidemics submitted policy language for the subcommittee to consider. Read the  full report (click on FY 2020 Bill Report), there are many additional recommendations on HIV as well as STIs and Hepatitis. The language is important because federal agencies are required to follow these directives. However, the Senate could add additional directives and the differences will need to be worked out in conference. Here are some of the items that caught NMAC’s attention:


Community-Based Organizations. —The Committee recognizes that community-based organizations play a crucial role because of their capacity to reach communities highly impacted by HIV. The Committee directs CDC to ensure that planning councils reflect their local epidemic by including community-based organizations and people living with HIV. The Committee further requests CDC’s progress of engaging such communities be included in the fiscal year 2021 Congressional Budget Justification.

2020 AIDS Conference. —The Committee recognizes the United States is hosting the International AIDS Conference for the first time since 2012. The Committee includes $5,100,000 for the U.S. contribution to the AIDS2020 Conference.

Office of AIDS Research. —The Committee directs NIH to increase funding for HIV/AIDS research by at least the same percentage as the increase in NIH overall funding. The Committee recognizes that OAR’s AIDS allocation to each IC is based on scientific need and opportunity. Therefore, individual IC AIDS budgets may not each grow at the same rate, but total AIDS and non-AIDS funding will continue to grow at a comparable rate.

Sexual Risk Avoidance. —The Committee includes no funding for grants to implement education in sexual risk avoidance, also known as abstinence-only until marriage programs.


The directive about CBOs considered policy language from NMAC and the Partnership to End the Epidemics. Planning councils must reflect the demographics of their local HIV epidemic. The House added the enforcement language. While we still have to wait for the Senate, NMAC hopes the planning directives to the 58 jurisdictions going out in June will reflect the House’s language. The Partnership also pushed for language about CBOs getting funded because in some jurisdictions not enough money flows to community. NMAC agrees with the House that CBOs are best able to reach the communities that are highly impacted by HIV.

NMAC was very pleased by the directive to ensure that NIH increases HIV/AIDS research funding by the same percentage as the increase to NIH’s overall budget. This has been a longstanding agreement. We encourage the Senate to include a similar directive.

Science has proven that abstinence only sexual health education does not work. We commend the House for following the science and defunding sexual risk avoidance. These programs run contrary to our HIV prevention work and our goal to get 1.1 million Americans on PrEP. Comprehensive sexual health education, including education about PrEP, is the only way to end the HIV epidemic.

While we face an uphill battle in the Senate, the House provided a template for the HHS budget that starts our work to end the HIV epidemic in America. Using 2019 funds from the Minority AIDS Initiative, HHS will put out a notice of the availability of funding in June to the 58 jurisdictions to support the start of their planning process. Things are moving and shifting quickly, we look forward to seeing you at this year’s United States Conference on AIDS.  This year’s meeting will focus on the federal plan to end the HIV epidemic. NMAC is pleased to announce that the National Institutes of Allergies and Infectious Diseases will bring representatives from all of the Centers for AIDS Research (CFARs) to USCA. It is very important that we work collaboratively to end the epidemic.

Yours in the struggle,

Paul Kawata
30 Years of Service

 

 

 

 

*This is a photo from back in the day of the Community Planning Leadership Summit. It documents the important collaboration between health departments, community and CDC.  (l-r) Dr. David Holtgrave (CDC), Frank Beadle (AED), Julie Scofield (NASTAD), & me.