Category: Blog

Important Happenings in HIV/Health Policy

Week Ending: June 01, 2018
By: Matthew Rose & Sable K. Nelson

Federal Fiscal Year 2019 Appropriations Season is Upon Us
In the coming weeks, the Appropriations Committees of both of the U.S. House and U.S. Senate will mark up the Federal Fiscal Year 2019 Appropriations bills. Markup is the process by which a Congress debates, amends, and rewrites proposed legislation. An appropriations bill is a piece of legislation that sets money aside for specific government spending. This is the third step in the Federal Budget Process:

Defense Department Sued over Policies Denying Service Opportunities to People Living with HIV (PLWH)
Lambda Legal and OutServe-SLDN filed two cases in the U.S. District Court for the Eastern District of Virginia against the Defense Department. The cases are entitled Harrison v. Mattis and Voe v. Mattis. The Harrison case was filed on behalf of Sgt. Nick Harrison, a veteran of two overseas combat zones who was denied a position in the Judge Advocate General (JAG) Corps because current Pentagon policy considers service members living with HIV non-deployable, and will not allow them to enlist or to be appointed as officers. The Voe case, was filed on behalf of a sergeant in the D.C. Army National Guard who was denied the opportunity to serve as an officer and faces possible discharge from the United States armed services because he is living with HIV. The lawsuit challenges the Pentagon’s current policies preventing enlistment, deployment, or commissioning as an officer for a person living with HIV, and likely would affect implementation of the new “Deploy or Get Out” policy unveiled by the Trump administration in February. For more information, READ the legal briefs → 

https://www.lambdalegal.org/in-court/legal-docs/harrison_va_20180530_complaint

https://www.lambdalegal.org/in-court/legal-docs/voe_dc_201805030-complaint

What NMAC is Doing About It

• NMAC remains vigilant in its advocacy to protect FY19 government funding and the existence of the social safety net.
• NMAC releaseda Biomedical HIV Prevention “Blueprint” entitled Expanding Access to Biomedical HIV Prevention: Tailoring Approaches for Effectively Serving Communities of Color, a new report that establishes strategies to effectively use techniques such as Pre-Exposure Prophylaxis (PrEP) and Treatment as Prevention (TasP) to end the HIV epidemic in communities of color. The full report can be found by visiting nmac.org/blueprint.
• NMAC will be on Capitol Hill this week speaking to legislators about the importance of sustained funding for HIV programs
• NMAC has been working in coalition around equal treatment for people of color living with HIV and vulnerable HIV to serve in the military

What You Can Do

TAKE ACTION: It is very important that our elected officials hear from us to protect federal HIV funding for HIV prevention and care. Speak truth to power by sharing your personal stories with your elected officials. It is vitally important to meet your federal elected officials when they are at home. If we don’t support and advocate for HIV funding and programs, who will?  Our movement cannot afford to stand on the sidelines.  Your U.S. Senators and U.S. Representatives need to hear from you. 

• Find your U.S. Senators: https://www.senate.gov/general/contact_information/senators_cfm.cfm
• Find your U.S. Representative: https://www.house.gov/representatives/find-your-representative

Also, MAKE SURE THAT YOU ARE REGISTERED TO VOTE in time for the primary and general elections happening this year:

For more information, VISIT→ https://www.eac.gov/voters/register-and-vote-in-your-state/

Finally, PARTICIPATE IN THE PRIMARY ELECTION(S) in your state:

For more information, VISIT→ http://www.ncsl.org/research/elections-and-campaigns/2018-state-primary-election-dates.aspx

Important Happenings in HIV/Health Policy

Week Ending: May 18, 2018
By: Matthew Rose & Sable K. Nelson

Trump Conflates HIV and HPV
Stigma, misinformation, and lack of education continue to be problems in the United States. This unfortunate reality was confirmed when Microsoft founder Bill Gates disclosed meetings he had with Donald Trump where Trump wanted to know if there was a difference between HIV and HPV. This underscores the need to address health literacy concerns and amplify/normalize HIV prevention and treatment messages/services. For more information,
READ → https://www.forbes.com/sites/brucelee/2018/05/18/what-bill-gates-said-about-trump-and-how-hiv-and-hpv-are-different/

Trump Administration Prepares to release domestic gag rule
As anticipated, the White House is poised to make an announcement regarding the proposed Domestic Gag rule. The proposed gag rule would do three things:

• First, it would impose new rules that are designed to make it impossible for millions of patients to get birth control or preventive care from reproductive health care providers like Planned Parenthood.
• Second, under this rule doctors, nurses, hospitals, and community health centers across the country could no longer refer their patients for safe, legal abortion.
• Third, it removes the guarantee that you’re getting full and accurate information about your health care from your doctor. For nearly two decades, Title X law has been clear: health care providers cannot withhold information from you about your pregnancy options.

For more information,
READ → https://www.npr.org/sections/thetwo-way/2018/05/18/612222570/white-house-to-ban-federal-funds-for-clinics-that-discuss-abortion-with-patients

FY19 Spending Season has began
Mark ups and consideration of the major spending bills for Fiscal Year 2019 have begun. Appropriations work has started taking place in both chambers with a full calendar of the process being released. Our friends at the Coalition for Human Needs have put together a list of where things are with some essential services.

Farm bill fails on first go around
On Friday the House voted against the Agriculture and Nutrition Act (H.R. 2), the Farm Bill reauthorization package, on a 198-213 vote. 30 Republicans joined all Democrats in voting against the package. House leadership has yet to announce potential next steps forward while the Senate Agriculture Committee continues behind-the-scenes negotiations on a separate version. For more information,
READ → https://www.cnbc.com/2018/05/18/house-farm-bill-vote-immigration-spat-sinks-legislation.html

National Academy of Medicine Article Offers Suggestions for Improving Health Literacy
Supporting health literacy for all will improve quality of health and medical care, enhance the care experience, and may even lead to reducing health costs. Health literacy is the degree to which individuals can obtain, process, and understand basic health information and services needed to make appropriate health decisions. Furthermore, culture plays an important role in helping us to better understand health literacy. For people from different cultural backgrounds, health literacy is affected by belief systems, communication styles, and understanding and response to health information. Even though culture is only one part of health literacy, it is a very important piece of the complicated topic of health literacy. For more information,
READ → https://nam.edu/the-case-for-health-literacy-moving-from-equality-to-liberation/

What NMAC is Doing About It

• NMAC remains vigilant in its advocacy to protect FY19 government funding and the existence of the social safety net.
• NMAC has begun a robust process with some of our partners around looking at the development of a federal plan for ending the epidemic.
• NMAC will meet with key legislators over the coming weeks to push for protections of our programs and support systems.

What You Can Do
TAKE ACTION: Speak truth to power by sharing your personal stories with your elected officials. It is vitally important to meet with your federal elected officials when they are at home. If we don’t support and advocate for HIV funding and programs, who will?  Our movement cannot afford to stand on the sidelines.  Your U.S. Senators and U.S. Representatives need to hear from you. 

• Find your U.S. Senators: https://www.senate.gov/general/contact_information/senators_cfm.cfm
• Find your U.S. Representative: https://www.house.gov/representatives/find-your-representative

Also, MAKE SURE THAT YOU ARE REGISTERED TO VOTE in time for the primary and general elections happening this year:

 For more information, VISIT→ https://www.eac.gov/voters/register-and-vote-in-your-state/

Finally, PARTICIPATE IN THE PRIMARY ELECTION(S) in your state:

More primary dates will be posted throughout the summer starting with our next policy update next week. Stay turned for this information and be sure to register so you can have your voice heard! For more information,
VISIT→ http://www.ncsl.org/research/elections-and-campaigns/2018-state-primary-election-dates.aspx

By Brian Ragas, Communications Manager, San Francisco Community Health Center

In 2005, San Francisco Community Health Center (formerly API Wellness) spearheaded the first National Asian Pacific Islander (API) HIV/AIDS Awareness Day. It’s hard to believe how far we’ve come as a community fighting against HIV and for the rights of the LGBTQ community and people of color since then. We’ve made gains I never thought we’d witness, such as the right to marry who you love and new, exciting HIV prevention tools like Pre-Exposure Prophylaxis (PrEP) and Post Exposure-Prophylaxis (PEP). Our accomplishments were laudable.

Today is a different day, however, and we are faced with a hostile and aggressive political climate that looks to unravel all that we have worked so hard for. Communities of color continue to bear the brunt of the HIV epidemic and are less likely to use innovative HIV prevention tools like PrEP/PEP. The same holds true for API communities. The environment we find ourselves in is cause for grave concern.

Recent data shows that Asians accounted for two percent (959) of the 40,040 new HIV diagnoses in the United States and six dependent areas in 2015. Gay and bisexual men accounted for 89 percent (729) of all HIV diagnoses among Asian men and among Asian women, 95 percent (125) of HIV diagnoses were attributed to heterosexual contact.

Complementing these figures is the fact that API’s have the lowest HIV testing rates for all races and ethnicities: 66.5 percent of Asian Americans and 43.1 percent of Native Hawaiian and Other Pacific Islander (NHOPIs) have never been tested for HIV. Asian transgender individuals, another high-risk group, have the lowest rates (49 percent) of testing out of all racial and ethnic groups.

As advocates in this community we know that stigma remains one of the biggest barriers preventing APIs from getting tested. Many A&PIs feel significant shame and discomfort around the topics of sex and HIV/AIDS and therefore do not speak of it. It starts now that we must end the silence.

It was our awareness of this stigma that led San Francisco Community Health Center to launch The Banyan Tree Project, a national campaign that reduces the levels of shame APIs have around HIV/AIDS. This year we adopted the slogan “Love & Solidarity: Together PrEP, Testing and Treatment can end HIV” to highlight these prevention tools to help get to zero on new HIV infections.

This year we are encouraging API transgender individuals and young men having sex with men (two high-risk groups that historically have low PrEP adoption rates) to talk about HIV/AIDs, to get tested, and to speak with a provider to see if PrEP is right for them. If you are HIV-positive we encourage you to get on treatment right a way to reduce your viral load to undetectable levels and not pass the virus.

We must continue to have these conversations and not perpetuate stigma around HIV Testing, PrEP, and Treatment. We need to celebrate when have victories when we bring community together to discuss these issues. I’m very happy to report that San Francisco Community Health Center just held its annual National Asian and Pacific Islander HIV/AIDS Awareness Day on May 10 at the University of California, Irvine where this project was 100 percent initiated by students on campus to give life to the epidemic in the community.

We vehemently hope that other community members in the API community and allies who wish to support observe May 19. The Banyan Tree Project put together a toolkit for organizations or individuals to put on their own events either big or small. Under the resource section of the website, the toolkit provides posters, factsheets on HIV in API communities, one on PrEP and another on stigma all available to download. Please contact The Banyan Tree Project for more information: info@banyantreeproject.org

National API HIV/AIDS Awareness Day
University of California, Irvine
May 10, 2018

Important Happenings in HIV/Health Policy

Week Ending: May 11, 2018
By: Matthew Rose & Sable K. Nelson

Trump Administration Offers Ideas for Lowering Drug Prices

On Friday, May 11, Health and Human Services Secretary Alex Azar discussed the Trump Administration’s plans to lower drug prices as President Trump looked on in the White House Rose Garden by:
1. Restructuring the way pharmacy benefit managers deal with drug makers
2. Changing the way Medicare pays for some expensive drugs
3. Making prices more transparent

For more information, READ → https://www.npr.org/sections/health-shots/2018/05/14/611075950/trump-administrations-3-biggest-ideas-for-lowering-drug-prices?utm_campaign=KHN%3A%20Daily%20Health%20Policy%20Report&utm_source=hs_email&utm_medium=email&utm_content=62919386&_hsenc=p2ANqtz–xrNAfHpubv4c4ItYHVUrf3fNcFiurCSRArVzbi1uRLE3JmYD5HWHIYduO7uYiQ3BksmmKGb-23i_Qp1a8QsyBNnprPQ&_hsmi=62919386

Maryland Announces Agreement on All-Payer Health Model

In 2014, Maryland became the only state that can set its own rates for hospital services and mandate that all payers charge the same rate for services at a given hospital in the state. However, the federal government required Maryland to further develop its health model to include health care that patients receive in the hospital and in the community. Just last week, Maryland announced that the federal government approved the state’s revised all-payer health care model in Maryland. For more information, READ → https://www.usnews.com/news/best-states/maryland/articles/2018-05-14/maryland-announces-agreement-on-all-payer-health-model?utm_campaign=KHN%3A%20Daily%20Health%20Policy%20Report&utm_source=hs_email&utm_medium=email&utm_content=62919386&_hsenc=p2ANqtz–xrNAfHpubv4c4ItYHVUrf3fNcFiurCSRArVzbi1uRLE3JmYD5HWHIYduO7uYiQ3BksmmKGb-23i_Qp1a8QsyBNnprPQ&_hsmi=62919386

PrEP Access for Minors

U.S. Food and Drug Administration (FDA) has approved once-daily oral Truvada® (emtricitabine 200 mg/tenofovir disoproxil fumarate 300 mg)—in combination with safer sex practices—to reduce the risk of sexually acquired HIV-1 in at-risk adolescents. The safety and efficacy profile of Truvada for HIV prevention in uninfected adults, a strategy called pre-exposure prophylaxis (PrEP), is well established, and Truvada for PrEP was first approved for use in adults in 2012.

The addition of the adolescent indication is based on a study in HIV-negative individuals 15 to 17 years of age. In the United States, adolescents and young adults 13 to 24 years of age comprised 21 percent of all new infections in 2016, according to the U.S. Centers for Disease Control and Prevention, and 81 percent of those infections were among young men who have sex with men (YMSM).
READ → https://www.nasdaq.com/article/gilead-sciences-says-fda-approves-oncedaily-oral-truvada-20180515-00982

What NMAC is Doing About It

NMAC remains vigilant in its advocacy to protect FY19 government funding and the existence of the social safety net.
NMAC released a Biomedical HIV Prevention “Blueprint” entitled Expanding Access to Biomedical HIV Prevention: Tailoring Approaches for Effectively Serving Communities of Color, a new report that establishes strategies to effectively use techniques such as Pre-Exposure Prophylaxis (PrEP) and Treatment as Prevention (TasP) to end the HIV epidemic in communities of color. The full report can be found by visiting www.nmac.org/blueprint.

What You Can Do

TAKE ACTION: Speak truth to power by sharing your personal stories with your elected officials. It is vitally important to meet to your federal elected officials when they are at home. If we don’t support and advocate for HIV funding and programs, who will?  Our movement cannot afford to stand on the sidelines.  Your U.S. Senators and U.S. Representatives need to hear from you.
Find your U.S. Senators: https://www.senate.gov/general/contact_information/senators_cfm.cfm
Find your U.S. Representative: https://www.house.gov/representatives/find-your-representative

Also, MAKE SURE THAT YOU ARE REGISTERED TO VOTE in time for the primary and general elections happening this year:

For more information, VISIT→ https://www.eac.gov/voters/register-and-vote-in-your-state/

Finally, PARTICIPATE IN THE PRIMARY ELECTION(S) in your state:

For more information, VISIT→ http://www.ncsl.org/research/elections-and-campaigns/2018-state-primary-election-dates.aspx

It’s time for a federal plan to end the epidemic! The National HIV/AIDS Strategy (NHAS) expires in 2020. Health and Human Services (HHS) should update the strategy and set a date for ending the epidemic in America and a plan to make that happen. This is not the time I would have chosen, but Dr. Redfield’s appointment as the new director of the Centers for Disease Control and Prevention (CDC) provides an unanticipated opportunity. For those of us who have spent a lifetime fighting this epidemic, words cannot describe what it means to still be alive and at the precipice of creating a federal plan to end the HIV epidemic in America. Given the diversity of our country, this plan should develop strategies and set overarching goals, but it is not a substitution for state and local planning. An updated NHAS should put everyone on the same page working to end the epidemic.

Knowing what we know, what does the plan need to address? My list is not comprehensive, but NMAC believes plans to end the epidemic start by:

• Leading with Race
• HIV, STDs, Hepatitis & Opioid Eradication
• New Testing Paradigm
• Economics of Ending the Epidemic
• Real Time Data

Leading with Race
People of color represent both the majority of people living with HIV and the majority of new HIV transmissions. It’s time to create solutions that are centered on our lives. We’re not asking the federal government to end racism, but we are asking them to figure out solutions that work in communities most at risk. The biggest challenge for people of color who live with HIV is retention in health-care, not access. What can we do to overcome this barrier?

First, we need to prioritize patient centered care models for people of color.  Far too often these models are based on white people and don’t speak to the reality of race in America.

Recently NMAC looked at Trauma Informed Care as a potential solution to why people of color are not retained in care. The trauma of racism, HIVphobia, homophobia, transphobia, and sexism all contribute to the trauma of living with HIV in America.  There is also a deep intergenerational mistrust of healthcare providers and medications. Working to address the trauma of living with HIV and the mistrust of providers may be key to retaining people of color in care.

However, our communities cannot wait for more studies. It’s time to listen and work with the people who live in and are a part of the communities we are trying to reach. Far too often our voice gets minimized. Maybe that is why so many of these efforts have failed.

HIV, STD, Hepatitis & Opioid Eradication
Let’s dream big! We cannot end HIV without considering other sexually transmitted infectious diseases. Unfortunately, each is a driver for the other. Let’s use this moment to not only end the HIV epidemic, but to also end Hepatitis, STDs, and Opioids.

NMAC believes biomedical HIV prevention is key to both ending the epidemic and caring for people living with HIV (PLWH). An undetectable viral load should be the standard of care for all people living with HIV (PLWH). The health benefits of a lower viral load cannot be denied, yet according to the CDC, 50 percent of the people living with HIV do not have it under control. It is important to not blame the individual, but to examine the systems of care that support them. The updated NHAS needs to commit to real targets for retaining patients in care and reducing viral load. U=U is essential to these plans and must be incorporated into the update. HRSA might consider tying funding to a grantee’s ability to lower their target community’s viral load.

Not enough people are on PrEP and those that stay on are 75 percent white. CDC needs to prioritize biomedical HIV prevention. It’s time to reevaluate the role of DEBIs/EBIs and the funding and infrastructure used to support them. It’s not enough to say we are committed to PrEP, PEP, TasP, and U=U. The data need to show that programming is making a difference. Unlike other prevention efforts, the success of these initiatives can be measured. We can collect data on the number of people who start and stay on PrEP and by tracking a community’s viral load. There are new ways to measure success and they need to be part of an updated NHAS.

Needle exchange is a true success story in our work to end the epidemic. The reduction of new HIV infections among drug users has been historic and unprecedented. Unfortunately, the emerging opioid epidemic could unravel all this hard work. Look at what happened in Scott County, Indiana. There is a tripling of new hepatitis C infections in the US. Unfortunately, it’s not just the opioid epidemic. NMAC is also concerned about the increase of meth use by gay men. The updated NHAS should be expanded to include a strategy on opioids and other substance use and HIV.

New Testing Paradigm
Everyone tested for HIV should also be tested for STDs and Hepatitis. The goal is to create a new testing paradigm that links people who test positive for any of these sexually transmitted infections into care. This new paradigm will identify people who need our services across diseases and end the artificial separation in diagnoses. We need a rapid test for HIV, STDs, and Hepatitis that is easy to use, economical, and widely available.

HHS needs to support collaboration between CDC, HRSA, SAMHSA, NIH, health departments, CBOs, PLWH, and people on PrEP to retool their testing protocols. The new paradigm should include nurse practitioners housed at testing sites who can immediately prescribe PrEP or other medications. Rapid testing with nurse practitioners should also be available at pharmacies and in other settings.

Economics of Ending an Epidemic
Ending the epidemic requires additional resources. In the long term, getting to zero will save money because we will significantly reduce the number of new cases. However, there are real costs to scale up efforts. A redirection of existing resources is not enough.

At the same time, we don’t want bureaucracies to grow at the expense of transformational solutions. Far too often we feed the beast at the expense of innovation. Getting to zero is going to take lots of innovation. We may have the science to stop the virus, but we don’t fully understand how to implement that science in the communities with the greatest needs. Innovation requires the voices of the people who live, work, and play in the communities we are trying to reach.

Timely Data
We cannot create real solutions without access to timely data for all communities. We need to improve the amount and quality of data collected from the trans community, women, and gay men. Innovation requires access to this information. Communities must be better trained and integral to these systems. At the end of the day, data must be the foundation for what works and what needs improvement.

Community cannot be an after-thought in the process. Dashboards and APIs (application programming interface) must be developed for them. It is particularly important to include PLWH and people on PrEP in these discussions. Their data is not something abstract and its safety must be prioritized. However, how we use data has changed and our movement must catch up. Do systems developed in the 1980s still make sense now?

Even with these efforts, ending the HIV epidemic will still have over one million Americans living with HIV. That’s the difference between ending the epidemic vs. ending AIDS. Ending AIDS requires a cure and a vaccine, something that is beyond community. Ending the epidemic means reducing the number of new cases to below epidemic proportions. Our work will not be over when we end the epidemic. We will continue to be concerned about health and wellbeing of the 1.1 million people living with HIV who will need ongoing healthcare, medications, and supportive services so that they can stay healthy and prevent transmission to others

Obviously, there are many other innovations and priorities. This is just the start of the conversation. Our movement is about to put together its final plan or at least its next to final plan. For those of us who have spent our lives fighting this disease, this is a huge bittersweet moment.

Yours in the struggle,

Paul Kawata
Executive Director