Can We Talk?

These are scary times. Can we talk? NMAC wants to hold an online hangout with a purpose, to talk about Coronavirus Emergency Loans for Nonprofits. We are not experts on the topic, but we wanted to make sure that everyone has information about this program.

NMAC will hold two webinars on Thursday, April 2.

The purpose of the webinars is to discuss relief for nonprofits via the Coronavirus Aid, Relief, and Economic Security (CARES) Act. There is $350 billion to help small businesses and nonprofits. We specifically want to discuss the Paycheck Protection Program because of the loan forgiveness component of this program. This program will be administered by the Small Business Administration. Loans will be guaranteed by the federal government, nonprofit need to apply at one of the approved banks.

Who Is Eligible?
A 501©(3) with fewer than 500 employees

How Much Can A Nonprofit Borrow?
Loans through this program can be up to 2.5 times the nonprofit’s average monthly payroll costs, not to exceed $10 million. Your average monthly payroll is the sum of salary, or wages. It includes vacation and/or sick leave, healthcare benefits including insurance premiums, retirement benefits, and state or local tax assessed on the compensation. Compensation of an individual employee in excess of $100,000 annually will be prorated for the period from February 15 to June 30, 2020.

The Loan Can Be Forgiven
Nonprofits are eligible for loan forgiveness equal to the amount they spent on the following items during the two-month period starting on the loan’s origination date:

  • Payroll (prorated up to $100,000 per employee)
  • Rent or Mortgage Interest
  • Utilities (electricity, gas, water, transportation, telephone or internet)

However, loan forgiveness can be reduced if the nonprofit has a reduction in the number of employees or a reduction of greater than 25% in wages paid to employees. These details are still to be worked out.

Registration will be limited to 100 people per session. If the demand exceeds the spaces, NMAC will add additional sessions. NMAC is NOT an expert on this program or the SBA; however, we felt it was important for the HIV infrastructure to consider these loans. We want to thank the US Chamber of Commerce for the information we shared in this e-newsletter.

Yours in the struggle,

Paul Kawata

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

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

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

What’s In A Name?

The politics of HIV and AIDS can be difficult. Sometimes you have the best of intentions and it still goes wrong. Last week we made a mistake and I apologize. My Facebook post on the United States Conference on AIDS name change set off a firestorm of comments that I hope this e-newsletter will clarify.

NMAC is committed to People with AIDS and the Denver Principles. I was in the room when the Principles were finalized. In 1983, for reasons that are still unclear to me, I was recruited by Richard Dunne from Gay Men’s Health Crisis to come to Washington, DC to be the first executive director of the National AIDS Network. My founding board included Tim Wolfred from the San Francisco AIDS Foundation, Paula Van Ness from AIDS Project Los Angeles, Larry Kessler from AIDS Action Committee of Boston, Jim Graham from Whitman-Walker Clinic, and Michael Hirsch from the PWA Coalition of New York. It was Michael who vouched for me. Because of him, I was at the second meeting for what would become the Denver Principles. I was just a kid, yet there I was in the room with all of the heroes of our movement. It is Bobby Campbell, Bobby Reynolds, David Summers, Michael Hirsch, and Michael Callen who taught me about activism and speaking truth to power. I vividly remember Michael Callen and Michael Hirsch fighting about strategy like men who knew they were dying and the Denver Principles were their legacy. I am also one of 33 founders of the National Association of People with AIDS (NAPWA) and I am the last one alive. Whether it was a conscious decision or not, there needed to be one negative person in the room who could remember. That job fell to me. I seldom speak about my HIV status because I believe it is implies a privilege that really shouldn’t matter. However, it is my honor and responsibility to remember the stories and to call out the names of those early leaders so our movement will never forgot their courage and sacrifice.

Fighting for people with AIDS is in my DNA and a core value at NMAC. I would never intentionally do anything to erase People Living with HIV or AIDS. When NMAC announced the name change of USCA, we thought we were standing in solidarity with PLHIV. In the past, many leaders have told us that “the word AIDS is stigmatizing.” Per the Denver Principles, NMAC wanted to honor the leadership of PLHIV organizations. How can we reach community if we were using a word that they considered discriminatory? Unfortunately, to some PWAs, our action looked like the opposite of its intention.

Last Friday there was a call of NMAC’s board, staff, and constituent advisory panels to talk about the name. People of color understand the importance of self-determination and the pain of erasure. Our first step was to consult and work with the organizations that were founded and led by people living with HIV and people with AIDS. We reached out to the Positive Women’s Network, Positively Trans, US People Living with HIV Caucus, and the National Working Positive Coalition to ask them for help. We invited them to the 2020 conference to facilitate a community discussion about the Denver Principles, the use of People Living with HIV and People with AIDS, and the need for our movement to support the principles of empowerment and self-determination.

The name of the conference will be changed to the United States Conference on HIV/AIDS (https://uscha.life/). The revised name was suggested by many PWAs online. Nobody wins when our movement is divided, particularly when it’s about the name of a conference. NMAC may have had the best of intentions, but it was definitely not the right time or way to make the change. We had to move quickly to make these changes, including the welcome video and the Spanish Language version of the site. Please let me know if we missed any of the needed changes.

I would be remiss if I did not mention concerns about the tone and tenor of some of the comments on Facebook. While it was mostly an amazing conversation between activists, a few of the posts crossed the line. As an organization that leads with race, our job is to help our movement understand the impact that race has on our work. A few comments were quick to minimize the contributions of women of color, particularly women of color living with HIV. Assumptions were made about their HIV status that were wrong. Assumptions were made about NMAC’s commitment to the Denver Principles and People With AIDS that were also wrong. While they may not have intended for their comments to be viewed through the lens of race, to people of color certain shares were hurtful and all too familiar.

I don’t know why I got to be in the room at the start of the National Association of People with AIDS or when the Denver Principles were finalized. The meetings were a master class in leadership that formed the foundation for my activism. The San Francisco/New York differences in strategy were the stuff of legends. These were men – yes, it was only men back then and mostly white men – who were fighting for their lives. They talked about empowerment because the world had taken away their power. For some of them, it was their first experience as a second-class citizen, and it made them mad. Everything they believed in had vanished and in its place was a death that was worse than anyone could have imagined. Empowerment and self-determination are shared values for PLHIV/AIDS and people of color. While NMAC’s goal was not to erase People with AIDS, I do understand how our actions could be misinterpreted. We made a mistake and changing the name to the United States Conference on HIV/AIDS is our way to apologize and hopefully move forward. Activism works!

Yours in the struggle,
Paul Kawata

The President’s Budget

Today the administration released their recommendations for the 2021 federal budget that included $716 million for the Ending the HIV Epidemic (EHE) efforts. The Budget includes: $371 million for CDC to reduce new HIV infections; $302 million for Health Resources and Services Administration (HRSA) to deliver HIV care through the Ryan White HIV/AIDS Program and to supply testing, evaluation, prescription of PrEP, and associated medical costs through the Health Centers program; $27 million to the Indian Health Service (IHS) to tackle the epidemic in American Indian and Alaska Native communities; and $16 million for the National Institutes of Health (NIH) for evaluation activities to identify effective interventions to treat and prevent HIV.

Congress does not typically pass a budget in an election year and more than likely we have a Continuing Resolution (CR). NMAC and the many partners with a Washington presence will fight like hell for the new funding, but there are forces beyond HIV that will shape the end result. All is not lost, because often a budget gets passed after the election.

NMAC is a small agency working to have a huge impact. While we are thankful to the administration for the much-needed funding, it is difficult, if not impossible to reconcile our concerns about other parts of the budget and the policies of the administration. Our movement looks to NMAC to lead with race as we fight for health equity and racial justice for the communities hardest hit by HIV. We try to walk this very thin tightrope, but it’s not easy and there are many landmines.

Over the next few months, the federal government’s EHE efforts will grant hundreds of millions of dollars to the 57 target jurisdictions and beyond. This initiative is the direct result of NMAC and many other partners working together to move our work beyond the maintenance phase that had become the new normal. Now our job is to make sure the new funding gets to community because that is where we will end the epidemic.

Our EHE work must be based on our values. NMAC leads with race to end the HIV epidemic. Our values shape the way we fight. They are the foundation for the principles that guide our work and the best practices to end the epidemic. Here are some values that we hope jurisdictions will incorporate into their plans,

  • Race matters.
  • People Living with HIV/AIDS must be prioritized, especially PLWH/A who have fallen out of care and off their meds.
  • Jurisdictional plans must reach communities highly impacted by HIV who were missed in previous efforts.
  • Reaching hard to reach communities requires the buy-in and leadership from the people we are trying to reach.
  • New hires to implement EHE plans should come from these communities.
  • Funding should always follow the data; however, we need better data on the transgender community.
  • CDC needs to stop classifying the transgender community with men who have sex with men.
  • Community led planning and community evaluation needs to be built into the process.
  • Scientifically proven interventions are key to this effort. These interventions must work at a scale to reach the large numbers targeted in the plan.
  • Fighting stigma and ending HIV criminalization is core to supporting people living with HIV/AIDS.
  • STDs and Hepatitis are key pathways to ending the HIV epidemic.

NMAC is concerned that some jurisdictions will repeat the same programs and miss key communities. While we need to expand programs that are successful, we must also acknowledge that large segments of the communities highly impacted by HIV are not being reached. This is particularly true for gay men of color, black women, the transgender community, and people who use drugs. NMAC respects Dr. Redfield’s call for Disruptive Innovation to end the epidemic. Like him, we believe there needs to be disruptive innovation in order to reach communities that don’t trust the status quo.

Talking To CDC
Centers for Disease Control and PreventionTwo weeks ago, I wrote about the number of staff that are in CDC’s Division of HIV/AIDS Prevention. After talking with CDC, it is important for me to correct the record. The Division of HIV/AIDS Prevention (DHAP) at CDC does not have 800 full time employees:

  • DHAP has the authority to hire 554 full time permanent employees at headquarters and 20 in the field for direct assistance.
  • However, currently, the Division has approximately 425 full time permanent employees at headquarters and 13 in the field.

CDC let me know that they need a fully resourced headquarters operations to reach the goals of EHE and to perform the following types of work:

  • Running a state-of-the-art laboratory.
  • Developing, planning, implementing, managing, and evaluating strategies for HIV prevention with state and local public health departments, community-based organizations, and other nongovernmental organizations.
  • Monitoring HIV trends and providing the epidemiological investigation and analysis required to support informed prevention efforts and public health action at federal, state, and community levels.
  • Conducting HIV outbreak detection and response.
  • Conducting research to ensure that proven and innovative tools and interventions are available to prevent HIV.
  • Developing, evaluating, producing, and disseminating science-based communications on HIV for the public, providers, and persons at risk of HIV infection to ensure they have the tools needed to protect themselves or their patients from HIV infection.
  • Investing in the next generation of public health professionals.
  • Improving HIV prevention workforce by increasing the knowledge, skills, technology, and infrastructure needed to implement and sustain science-based, culturally appropriate HIV prevention interventions and strategies.

CDC also said that 9% of the funding will stay at the agency for operations, or around $12.6 million. I appreciate their transparency about funding and hope it will continue. NMAC’s concern was not about the specific number of employees, but rather the building of a government bureaucracy vs. getting the money to the field. NMAC’s goal is to make sure money and programming gets to community because we believe that is where it can make the biggest difference. NMAC and CDC agreed to monthly calls to build better collaboration.

NMAC and CDC agreed to monthly calls to build better collaboration. The first call will be coordinated by NMAC’s Center to End the HIV Epidemic in conjunctions with the 57 jurisdictions prioritized in the EHE plan. This will be an opportunity for them to interact with colleagues from other regions and to ask questions to the CDC.

With the HRSA and CDC funding announcements on the street, NOW is the time to make sure the money gets to where it can make the most difference. If we don’t speak up, decisions will be made that may or may not include community.

NMAC is a small agency working to change the world. We focus on race and its impact on HIV. It’s easy to feel like Don Quixote. Are we chasing after windmills or changing the world? Sometimes they look the same. This may be an impossible dream, but we are still praying for a cure and a vaccine. NMAC believes there is a world without HIV/AIDS, and we are fighting to make that dream real.

Yours in the struggle,
Paul Kawata
Paul Kawata

 

Changing Our Name to USCH

NMAC is changing the name of the United States Conference on AIDS to the United States Conference on HIV. AIDS is considered stigmatizing language to many people living with HIV and the last thing we want to do is add to their discrimination. This is especially important because we need to reach 500,000 more people living with HIV if we want to end the domestic epidemic. Please watch this important video about the 2020 meeting!

Join us October 10-13 in San Juan, Puerto Rico. The web site for the 2020 USCH is now live! The 2020 theme is Luchando Por Nuestras Vidas (Spanish for Fighting For Our Lives). The theme honors our past and speaks to the future. Unfortunately, luchando por nuestras vida is what the people of Puerto Rico do daily. The theme also speaks to the struggle facing people living with HIV and people on PrEP. We are all connected in the fight for a fair and just world.

The 2020 meeting will serve Puerto Rican and US Virgin Island realness to educate about the challenges of reaching people who speak different languages or have different cultures and values.

The 2020 meeting is in San Juan to 1) provide economic development in a country devastated by Hurricane Maria and the recent earthquakes, 2) give attendees the experience where English is not the primary language, and 3) learn about the rich Puerto Rican and US Virgin Island cultures as a way to value differences.

This image of doors in Old San Juan gets at the message for this meeting. We are all different and beautiful in our own way. Our movement is about the diversity of the doors and how to value and honor differences.

 

San Juan Convention Center

 

 

 

In order to hold the meeting in San Juan, we had to move to the Puerto Rico Convention Center. It is the only site big enough for USCH. I was just there for a planning meeting with the Puerto Rico Host Committee. They are so excited to share their story of overcoming the challenges of weather, earthquakes, and HIV.

 

 

 

 

Just in time for USCH, a new entertainment center, El Distrito, will open next to the convention center. El Distrito will have inexpensive dining options, a movie theater, concert hall and an Aloft hotel. Phase I of the complex is slated to open in March.

Registration
Registration is now open. You must register before you can make your hotel reservation if you want to be part of the conference block. Early bird registration fees are $490 for NMAC members and $625 for non members.

Hotel Accommodations
There are no hotels big enough to host USCH in San Juan. As a result, multiple hotel blocks will be available for attendees. While not ideal, it was the only way to bring the meeting to Puerto Rico. You must register for the conference in order to gain access to the block. Rooms will be set aside for scholarship recipients.

 

 

Most attendees will stay in one of two hotels. The Sheraton Puerto Rico is the host hotel and is located next to the convention center. Rooms at the Sheraton are $179 per night (plus taxes). We also have a block at the Caribe Hilton. This hotel just reopened; it was destroyed by Hurricane Maria in 2017. Rooms at the Hilton are $199 per night (plus taxes). The Hilton is located on the water a little further from the convention center. Buses will be provided to get people from the Hilton to the convention center. Hotel rooms are limited, so please register early.

For people needing less expensive accommodations, NMAC recommends Airbnb. On that site we found many reasonable places to stay near the convention center. Rooms and whole apartments can be found for $65 per night (plus taxes and fees). Unfortunately, San Juan is hurting for business. Air travel and accommodations are very reasonable. There is a direct flight out of DCA that is less than $300 (r/t). Our goal to bring economic development is real. In the near future, we will provide a list of local vendors for exhibitor and sponsors. Our hope is that everyone uses local companies, The people and businesses in San Juan need our help.

2020 Plenaries

  1. HIV in the Latinx Communities. This will be a Spanish language plenary with simultaneous English translation on the screens.
  2. Gilead Plenary
  3. Federal Update
  4. Proof of Concept that Biomedical HIV Prevention Works

The Opening honors Puerto Rico in food, decor, speakers, and language. It will represent the diversity of Puerto Ricans and Latinx who are working to end the HIV epidemic. This will be a Spanish language plenary with English translation on the large screens as a crawl at the bottom of the screen. It will feature Puerto Rican Salsa and Bomba y Plena music

2020 Workshops
There will be a Spanish language track of workshops. In fact, the Call for Abstracts is in both English and Spanish. One of the new tracks is on Geriatric HIV Services. As PLWH age, it is time to relook at the mix of services our movement provides. During the early days, no one could have imagined the need for these services.

Child Care
NMAC will again provide child care. Like geriatric HIV services, child care was not on our radar in the early days. Now so many HIV positive people have children. It is a joy and honor to provide child care for them.

Opening Reception
The folks in PR are having real financial challenges, so it is not reasonable for NMAC to ask them to cover the same expenses as a typical host city. The host committee will be asked to put together the reception’s program that highlights the many cultures of Puerto Rico. NMAC is still trying to figure out how to cover the cost of food.

Guayaberas Shirts
NMAC staff will wear Guayaberas on the first full day of USCH. A guayabera is a traditional Cuban shirt. The origin story tells of a poor countryside seamstress sewing large patch-pockets onto her husband’s shirts for carrying guava from the field. NMAC staff will wear guayaberas to honor the history and legacy of this shirt. We will put the 2020 theme, Luchando Por Nuestras Vida, on the back of the shirt.

Scholarships
The scholarship section will go live on March 3. Last year we had challenges and many constituents were not happy with the results. This year NMAC has committed to double the number of A&B scholarships. However, given the number of applications we receive (more than 1,200), most people will be turned down. Do not depend on a USCH scholarship, Try to find other ways to get to the meeting. The website will share alternative ways to support your travel.

In our efforts to end HIV we must value and honor the cultures of the communities we are trying to reach. HIV impacts very specific communities. These are not general campaigns trying to reach everyone; these are targeted efforts. While the geographic targets are most obvious, within the 57 jurisdictions there are additional targets needed to end the epidemic. Understanding the values and cultures of the communities hardest hit by HIV is key to our success.

See you in October.

Yours in the struggle,
Paul Kawata

Nothing About Us Without Us

Our movement is about to have a large influx of new cash. Over the next few months, hundreds of millions in new federal funds will go to the 57 jurisdictions and beyond to end the HIV epidemic in America. It was not an easy task to get new money during the Trump administration and now we need to make sure that resources get to where they are most needed.

The nearly $300 million in new funding mandates greater scrutiny by everyone impacted. Decisions will be made that could determine the future of health departments, community-based organizations, health centers, researchers, national organizations and pharma. Will the new funds get to the communities hardest hit by HIV or will it be used to increase the bureaucracy?

Decisions will be made that could upend the service mix for people living with HIV. Currently, around 700,000 people living with HIV are in healthcare with various degrees of viral suppression. The goal is to add 500,000 more people into the system and to have them be virally suppressed. Additionally, the plan will enroll 900,000 more people onto PrEP. To reach these large numbers, health systems and services need to be expanded. Systems must reach thousands if not tens of thousands more people. Most of the targets come from the most marginalized communities in America. Beyond race, gender, or gender identity, these communities battle depression, drug and alcohol use, and mental health issues.

Last week CDC released their new NOFO (CFC-RFA-PS20-2010) to get the new appropriations to state health departments. $109 million was made available for 48 awards. Since CDC’s Ending the HIV Epidemic appropriations was $140 million, what are they doing with the other $31 million? Transparency is key to our continued collaboration.

Last week I officially joined the grumpy old men’s club when I talked about the nearly 800 staff in CDC’s Division of HIV/AIDS Prevention. The number pushed my buttons because NMAC has nearly 20 staff. Like most community focused organizations, we’ve had to learn magic. The agency has a huge job but must live with limited resources. We’re lucky because we survived. How many organizations, particularly within communities of color, have closed?  The irony is that we need those agencies now more than ever. Ending the epidemic requires us to reach communities that have eluded previous efforts. Agencies created to support many of our targets closed down over the last 10 years.

NMAC played a critical role the last time our movement saw significant new resources. The Minority AIDS Initiative was funded by Congress in 1998 to build and support minority community-based organization. NMAC, through the important work of Miguelina Maldonado, worked diligently with the Congressional Black and Hispanic Caucuses to craft the legislation. Over time funding from the MAI was reprogrammed for non-minority issues. NMAC is concerned that we don’t repeat history by taking money meant for ending the epidemic and using it for other purposes.

I’ve worked with HHS, CDC, HRSA, and NIH since the 1980s, I remember all the decisions, good and bad, that were negotiated. Far too often community had no voice while funding was reprogrammed. Not this time. We get nothing by being quiet. Over the next six months, decisions will be made that impact our ability to end the epidemic. However, it won’t happen if we can’t reach the 500,000 people living with HIV and get 900,000 more sexually active people on PrEP. This is a huge task that requires real leaders who can work collaboratively with Community. And those leaders making the decisions must reflect the Community that they are serving. Otherwise, we will continue to make the exact same errors that have made the HIV Epidemic what it is today. Dr. Redfield’s mantra of needed Disruptive Innovation cannot ever become reality if we do more of the same.

Yours in the struggle,
Paul Kawata