Empowering Older Adults Living with HIV to Manage their Health

Important Happenings in HIV/Health Policy

Important Happenings in HIV/Health Policy

Week ending: February 15, 2018
By: Sable K. Nelson & Matthew Rose

Elizabeth Warren’s ambitious plan to fight the opioid epidemic, explained

Elizabeth Warren (with Rep. Elijah Cummings) introduced the Comprehensive Addiction Resources Emergency (CARE) Act in 2018 which would authorize $100 billion over 10 years to address drug addiction by boosting addiction treatment and other policy initiatives to reduce overdose deaths. This bill is being compared to the model of the Ryan White Program which greatly minimized the HIV/AIDS epidemic in the 1990s. The CARE Act has not moved far in the Congress yet but it hopes to go through some more edits as it still exemplifies a great start to addressing the issue. For more information, READ → https://www.vox.com/future-perfect/2019/2/19/18214179/elizabeth-warren-opioid-epidemic-president-trump

 

Federal Judge Temporarily Blocks Military from Forcing Out HIV-Positive Airmen

Citing a lack of evidence that HIV should prevent them from serving, a federal judge ordered the Department of Defense to halt the pending discharge proceedings against two HIV-positive members of the U.S. Air Force. Last year, two airmen living with HIV sued after they were discharged because of their condition. They provided medical evidence to show that they were asymptomatic and physically fit to deploy. The federal judge’s ruling allows the two airmen who sued to remain in their posts pending trial. Without intervention, both would have been terminated in the next few weeks. For more information, READ → https://www.washingtonpost.com/local/public-safety/federal-judge-temporarily-blocks-military-from-forcing-out-hiv-positive-airmen/2019/02/15/5e40b1a2-313c-11e9-813a-0ab2f17e305b_story.html?noredirect=on&utm_term=.86b3068aac4a

 

HHS Requests Community Feedback on National HIV/AIDS Strategy (NHAS) and the National Viral Hepatitis Action Plan (NVHAP)

Both the National HIV/AIDS Strategy (NHAS) and the National Viral Hepatitis Action Plan (NVHAP) expire in 2020. The Department of Health and Human Services (HHS) Office of HIV/AIDS and Infectious Disease Policy (OHAIDP), in collaboration with federal partners, is leading development of the next iterations of these two separate and distinct national strategies. To help inform the next iterations of the NHAS and NVHAP, HHS seeks input from external stakeholders for improving efficiency, effectiveness, coordination, and accountability of HIV and viral hepatitis prevention, care, treatment, and cure policies, services, and programs.

SAVE THE DATE for the In-Person Listening Session on Friday, February 22, 2019: 
In-person Listening Session at HHS from 11:00 a.m.–1:00 p.m. (ET) in Room 800 of the Hubert H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC, 20201. RSVP by Thursday, February 14 by sending your name, title, and organization to HepHIVStrategies@hhs.gov.

SHARE YOUR COMMENTS IN WRITING no later than 5:00 p.m. ET on March 11, 2019:
 In addition, we will soon publish a Request for Information (RFI) in the Federal Register to solicit written comments, recommendations, and ideas for updating both the NHAS and the NVHAP. As soon as the RFI is published, NMAC will provide a link to it as well as information about its deadline for input.

Electronic responses are strongly preferred and may be addressed to HepHIVStrategies@hhs.gov.

Hardcopy written responses should be addressed to: 
U.S. Department of Health and Human Services 
Room L001 
330 C Street SW 
Washington, DC 20024
Attention HIV/Viral Hepatitis RFI

All the input gathered from the listening sessions and responses to the RFI will be shared with our federal partners, who collectively will use that information to update the vision, goals, and strategies for both plans, as well as each agency’s actions for implementing them.
For more information, READ https://www.federalregister.gov/documents/2019/02/08/2019-01695/request-for-information-rfi-improving-efficiency-effectiveness-coordination-and-accountability-of

 

NIH Seeks Feedback from interested stakeholders on a review of the NIH HIV/AIDS Research Priorities and Guidelines for Determining AIDS Funding

The Office of AIDS Research (OAR) in the Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI), Office of the Director (OD), National Institutes of Health (NIH) invites feedback from interested stakeholders on a review of the NIH HIV/AIDS Research Priorities and Guidelines for Determining AIDS Funding (NOT-OD-15-137) now entering year four of implementation. To ensure consideration, responses must be submitted by: April 13, 2019 11:59:59 PM EDT. For more information, READ https://www.federalregister.gov/documents/2019/02/08/2019-01695/request-for-information-rfi-improving-efficiency-effectiveness-coordination-and-accountability-of

 

Podcast: KHN’s ‘What The Health?’ “Medicare-For-All” For Dummies

The “Medicare–for-all” debate is already in full swing, but what does that phrase even mean? Joanne Kenen of Politico, Paige Winfield Cunningham of The Washington Post and Rebecca Adams of CQ Roll Call join KHN’s Julie Rovner for a beginner’s guide to the next big health policy debate. For “extra credit,” the panelists provide their favorite health policy stories of the week, and as a special Valentine’s Day bonus, their favorite #HealthPolicyValentines. For more information, LISTEN → https://khn.org/news/podcast-khns-what-the-health-medicare-for-all-for-dummies/

 

The Real Reasons Women of Color Lack Access to Health Care

The most prominent factors influencing why women of color are more severely affected with certain health issues is due to the lack of access to and understanding of health care resources. There are biases embedded in physicians and the health care system itself that directly affect care quality (according to Dr. Nesochi Okeke-Igbokwe). The lack of information and resources is prevalent among women of color who need mental health. They have limited access to mental health resources and find little merit in seeking professional help. Due to their deep desire to seem strong, they perceive their struggles as a sign of weakness and wait too long before seeing a doctor. In dealing with these factors, women of color need to be empowered and educated about their options.For more information, READ → https://www.sheknows.com/health-and-wellness/articles/2002411/women-of-color-health-care/

 

What You Can Do

TAKE ACTION: It is very important that our elected officials hear from us to protect federal 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 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.

What NMAC is Doing About It

  • NMAC remains vigilant in its advocacy to protect FY20 government funding and the existence of the social safety net. And we  will start looking for increases to our existing programs.
  • NMAC is planning for the new year and meeting our new members of Congress. We are very excited to talk to the new House about our priorities.
  • NMAC is working in coalition to defend the right of people living with HIV to serve in the US military.

Important Happenings in HIV/Health Policy

Important Happenings in HIV/Health Policy

Week ending: January 25, 2018
By: Sable K. Nelson & Matthew Rose

HHS Requests Community Feedback on National HIV/AIDS Strategy (NHAS) and the National Viral Hepatitis Action Plan (NVHAP)

The U.S. Department of Health & Human Services Office of HIV/AIDS and Infectious Disease Policy (OHAIDP) will soon host two listening sessions to continue gathering public input for updates to the National HIV/AIDS Strategy (NHAS) and the National Viral Hepatitis Action Plan (NVHAP). Both national plans currently expire in 2020.

Save the Dates for the In-Person Listening Session on Friday, February 22, 2019: 
In-person Listening Session at HHS from 11:00 a.m.–1:00 p.m. (ET) in Room 800 of the Hubert H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC, 20201. RSVP by Thursday, February 14 by sending your name, title, and organization to HepHIVStrategies@hhs.gov.

Share Your Comments in Writing

In addition, we will soon publish a Request for Information (RFI) in the Federal Register to solicit written comments, recommendations, and ideas for updating both the NHAS and the NVHAP. As soon as the RFI is published, NMAC will provide a link to it as well as information about its deadline for input.

All the input gathered from the listening sessions and responses to the RFI will be shared with our federal partners, who collectively will use that information to update the vision, goals, and strategies for both plans, as well as each agency’s actions for implementing them.

Modeling Study Shows Two Common STDs Threaten Advances in HIV

Despite tremendous advancements that have been made toward the goal of ending the HIV epidemic in the US, a modeling study recently published in Sexually Transmitted Diseases, Researchers reported that 10 percent of all new HIV cases among men-who-have-sex-with-men in the US are caused by gonorrhea and chlamydia infections. Gonorrhea and chlamydia are the two most common reportable infections in the US. This model supports research showing these STDs increase the body’s risk to transmit and receive HIV. The increase of gonorrhea and chlamydia threatens the decrease of over 13 percent in new HIV cases over the last eight years – as the result of sustained federal investment in HIV prevention and the advent of biomedical advances like PrEP. For more information, READ → http://www.ncsddc.org/wp-content/uploads/2019/01/2019_Jones_Proportion_of_Incident_HIV_Cases_among_Men_Who.98127.pdf

Drug-Pricing Policies Find New Momentum As ‘A 2020 Thing’

Emboldened by midterm election results and interest in possible presidential runs, Democrats are advancing a slew of new and old legislative proposals. It’s not yet clear, though, which if any could go the distance. For more information, LISTEN → https://khn.org/news/drug-pricing-policies-find-new-momentum-as-a-2020-thing/

Podcast: KHN’s ‘What The Health?’ ‘Medicare-For-All’? More? Some?

“Medicare-for-all” has become the rallying cry for Democrats in the new Congress. But there is a long list of other ways to increase insurance coverage. Meanwhile, the Trump administration continues to chip away at the Medicaid program for the poor, and new rules could mean higher costs for individual health insurance in 2020. Alice Ollstein of Politico, Stephanie Armour of The Wall Street Journal and Paige Winfield Cunningham of The Washington Post join KHN’s Julie Rovner to discuss these issues and, for “extra credit,” provide their favorite health policy stories of the week. For more information, LISTEN → https://khn.org/news/podcast-khns-what-the-health-medicare-for-all-more-some/

What You Can Do

TAKE ACTION: It is very important that our elected officials hear from us to protect federal 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 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.

What NMAC is Doing About It

  • NMAC remains vigilant in its advocacy to protect FY20 government funding and the existence of the social safety net. And we  will start looking for increases to our existing programs.
  • NMAC is planning for the new year and meeting our new members of Congress. We are very excited to talk to the new House about our priorities.
  • NMAC is working in coalition to defend the right of people living with HIV to serve in the US military.

Reflection on Personal Experience at the 2018 Biomedical HIV Prevention Summit-Los Angeles, CA

By Michelle Rollins, 50+ Strong and Healthy Scholar

I walked away from the 2018 Biomedical HIV Prevention Summit on December 2-4, 2018 in Los Angeles, California having learned so much.

Introduction:
As a HIV 50+ Strong and Healthy Scholar, I was impressed with the many interesting topics covered. I learned that through prejudicial thoughts and actions, governments, communities, health care providers, employers, family members and colleagues often contribute to HIV stigma. I learned that ending the HIV epidemic in black and brown communities will take big, bold, innovative, policy initiatives along with authentic engagement. U = U and PrEP are valuable tools all persons can use effectively and an ambitious, effective public awareness campaign is needed. Presenters shared the importance of promoting U=U and PrEP among black women, who present a perfect opportunity to break down obstacles to increasing awareness and reducing stigma. Campaigns like this can be successful if they are strategic and tailored to the context, values, language, and resources available to target audiences. I also learned that stigma leads to several other health-related problems amongst persons diagnosed with HIV/AIDS such as: loneliness, isolation, low self-esteem, identity crises and a lack of interest.

This year’s subject matter is particularly important for the citizens of Garden Valley district, where I serve, because our strategy includes crafting easy to understand language in our messages as we speak to the community about advancing innovation, (PrEP), and ending the HIV epidemic in African American and LatinX communities. We believe wording and content of the message depends on what it is supposed to achieve.

Advancing Innovation:
There is a lot at stake! Ending HIV/AIDS is a big-time accomplishment right up there with ending polio, and all other life threating diseases.

I learned how it is important to recognize and address clear patterns of healthcare disparities among African American women. In fact, our greatest challenge is reducing the deep disparity in health status of minorities and especially African American women and make PreP readily available. I learned we are not reaching those in need of another option ending the HIV epidemic in black and Latino communities and ultimately the US will take multifaceted innovative and intentional approaches.

The Garden Valley Neighborhood House mission is to support and promote the advancement of health innovation and technologies in the greater Cleveland, Ohio area by advising, educating, and training community activists in the establishment and legitimate aspects of the healthcare sector. Our view is that health promotion messages should focus on what can be gained by changing behavior, while detection behavior messages should focus on what could be lost if they don’t go through with the screening. I presented on the innovative activities of the Garden Valley Neighborhood House in the Community Corner at the Summit.

Ending the HIV Epidemic:
Incorporating U=U and PrEP into our conversation and communities daily will help break barriers, save lives this will increase awareness and will help to reduce stigma. I learned that People Living with HIV/AIDS not only face personal medical problems but, also social problems associated with the disease such as stigma and discriminatory attitudes. Public stigma and discrimination have harmful effects on the lives of people with HIV/AIDS. I also learned overall education and contact has a positive effect on reducing stigma for adults living with HIV/AIDS. However, contact has a better effect than education at reducing stigma for adults. I learned face-to-face contact is more effective than contact by video.

I learned getting people to change patterns of human behavior is no easy task. What I already knew but has practical application is, in natural world there are basically two kinds of change: evolutionary and disruptive.

Conclusion:
Evolutionary change is gentler form of change, typically less destructive but it takes a very long time. Disruptive change is fast, and sometimes necessary but can be extremely destructive or constructive. Do efforts to engage African American women in U=U and PrEP pursue evolutionary change or disruptive change? Perhaps, we need a combination of both. If things continue on their current path, African American women will be digging ourselves out of a ditch.

As a community advocate, HIV 50+ Strong and Healthy Scholar and 2018 Biomedical HIV Prevention Summit attendee, I learned part of my task is to make determinations how to approach changing a group of people’s behaviors in order to save lives. I firmly believe through education about PrEP and increasing awareness in communities at most at risk is the key.
In my lifetime there have been seven deadly diseases cured. As a nation, we work tirelessly to remedy major epidemics and illnesses. With determined effort and advancing innovation we can end the HIV epidemic.

HIV  Biomedical Conference Reflections

By 50+ Strong & Healthy Program Scholar Paul Grace-Neal

I was honored to attend the Conference in December 2018 in Sunny Los Angeles, California.  The Spirit and excitement was the attendees was very high. I witnessed a lot of people’s hope in thriving while living with HIV.  This is significant to me because when I came out as a lesbian in the early 99’s, I attended countless funerals of folks who were newly diagnosed.  Their diagnoses became their swan song. Diagnostic protocols and treatment were crude and harsh and folks had not be introduced to symptoms and prevention so the diagnosis was often too late.  Today, with the flux in clinical research and early intervention, people can thrive and not just survive.

I was honored to witness countless folks share their testimonies of being undetectable.  U=U. People of all ages from their 30’s to well above 50 could finally live and excel with minimal complications, less pills, and a longer life expectancy.   I was honored to celebrate with everyone. I struggle with the implications of this campaign however. I think it generates a false sense of security as the health care industry attempts to irradiate other STI’s such as syphilis which recently has reemerged to pandemic proportions.

During the conference, I had an awesome privilege of engaging participants on two panels, Trans As Trade, which explored how Trans men are often discounted and erased in research and the LGBT community.   It is frustrating that in research and marketing, information is often categorized with cisgender women simply due to similar research results. If Trans women and gay men are at high risk and Trans men intimately engage with these populations,  shouldn’t we be as equally at risk for acquiring HIV and other STIs? I also shared on a panel with my fraternity members on considerations for receiving medical care as Trans. I shared as a nurse who works at an organization who provides care to PLWHIV and as a Trans man who is medically transitioning and has experienced negative situations while admitted in the hospital after surgery.

PrEP offers a lot of hope for all HIV negative folks including Trans men but if research and marketing discount them, doctors are less likely to see Trans men as high risk and will not be willing to prescribe it.  This puts Trans men at a higher risk of acquiring HIV. This thought pattern and lack of funding for research is disheartening and further erased and stigmatizes Trans men at exponential proportions.

I was honored at the opportunity to participate and serve at this conference.  However, I simply wish there was a greater push for Trans men to be validated, respected, and involved in furthering HIV treatment and eradication.

I look forward to be part of other conferences of NMAC.  I love the high energy and compassion you bring to provide a safe place for HIV individuals to be heard and HIV negative individuals to learn.

Important Happenings in HIV/Health Policy

Important Happenings in HIV/Health Policy

Week ending: January 11, 2018
By: Sable K. Nelson & Matthew Rose

TAKE ACTION: Trump Administration Proposes Changes to Medicare Part D Prescription Drug Benefit that Could Hurt PLWH

Centers for Medicare and Medicaid Services have proposed new rules that could have unprecedented access restrictions to lifesaving HIV drugs under Medicare Part D. If finalized, this rule would jeopardize our nation’s efforts to provide treatment to Medicare beneficiaries living with HIV, one of the largest providers of HIV care services. The new proposed rule would change the “protected class status” of anti-retrovirals under Medicare Part D, which allows PLWH to have direct access to the best treatments as prescribed by their doctor. Over the last 15 years, this policy has saved and improved millions of lives and brought us closer than ever to our shared goal of ending the HIV epidemic in the United States. AIDS United has led the charge, providing a way to edit and submit your own comments, check out: https://www.aidsunited.org/Take-Action/My-Status-My-Medicare!.aspx. Comments must be received no later than 5 p.m. on January 25, 2019 in response to a rule proposed by the Centers for Medicare and Medicaid Services. For additional information about the proposed regulation, check out this webinar presented by the HIV Health Care Access Working Group: https://www.youtube.com/watch?v=RXZy0yTaOZw&feature=youtu.be

READ: Report Impact of Trump Administration Judiciary on the LGBT Community

Lambda Legal issued a report entitled “The Promise of a Fair and Independent Judiciary is Under Siege.” This document examines the impact of the Trump Administration on the judiciary with an LGBT lens. The Trump Administration has worked tirelessly to confirm ideologically driven judges in order to further their ultraconservative policy objectives in the courts. To achieve this aim, the administration has worked closely in tandem with outgoing Senate Judiciary Committee Chairman Chuck Grassley, Senate Majority Leader Mitch McConnell, and advisors from a powerful, but shrouded, network of right-wing organizations. For more information, READ https://www.lambdalegal.org/publications/trumps-judicial-assault-on-lgbt-rights

US Senator and US Representatives Introduce Legislation to Reduce Prescription Drug Plans

On Thursday, Jan. 10, Sen. Bernie Sanders (I-Vt.) and Reps. Elijah Cummings (D-Md.), Ro Khanna (D-Calif.), Peter Welch (D-Vt.), Joe Neguse (D-Co.), and other cosponsors in the House and Senate held a press conference to announce a legislative package of three bills that would drastically reduce prescription drug prices in the United States. These bills seek to provide policy solutions to address particular challenges in the current health insurance market such as giving HHS the authority to invalidate manufacturers’ exclusivity rights if their prices are deemed excessively high; allowing HHS to negotiate prices for prescription drugs under Medicare Part D; and permitting Americans to buy drugs from other countries, like Canada. For more information, WATCH https://www.sanders.senate.gov/newsroom/video-audio/sanders-cummings-and-colleagues-announce-legislation-to-lower-drug-prices. For a good summary of how drug prices are set in the United States, LISTEN to a recent “Today, Explained” podcast regarding prescription drug prices: https://art19.com/shows/today-explained/episodes/cec4cf6e-55d0-4606-87ec-8ee2ad54b117

UPDATE: How the Government Shutdown Affects Health Programs

As the partial government shutdown stretches into unprecedented territory, several questions have been raised regarding the health and well-being of both the impacted government workers as well as the persons who benefit from government programs. For example, the USDA announced funding for SNAP (food stamps) will remain for February 2019 (for more information, READ https://www.cbpp.org/research/food-assistance/usda-to-fund-snap-for-february-2019-but-millions-face-cuts-if-shutdown) but it’s unclear what will happen after February if the government does not re-open. Similarly, health care benefits are not expected to be interrupted for those affected by the current partial federal government shutdown (for more information, READ https://www.npr.org/sections/health-shots/2019/01/11/683770812/most-federal-workers-health-coverage-to-continue-during-shutdown-even-if-pay-sto). However, some people living with HIV have already begun encountering obstacles and financial impediments for accessing essential HIV treatment, including labs and prescription medications.

What You Can Do

TAKE ACTION: It is very important that our elected officials hear from us to protect federal 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 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.

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 is planning for the new year and meeting our new members of congress we are very excited to talk to the new House about our priors. We spent last Thursday stopping by members’ offices to welcome them to Hill.
  • NMAC is working in coalition to defend the right of people living with HIV to serve in the US military.