How I Use MY Voice to Fuel My Activism

 It’s been a few weeks since I was asked to write one of NMAC’s weekly e-newsletters. At first, I was hesitant to speak to NMAC’s constituents through this platform; after all, it has been five years since I have spoken on a national stage. Since then, I had hoped a lot would have changed for the better.

For nearly 26 years I have spoken out as a voice in the HIV community. I believe there is a distinct difference between being a voice and being an advocate. An advocate is someone who publicly supports or recommends a particular cause or policy. A voice is a source of strength that can move others to make change. Voices of all tones (be them whispers or be them shouts) are powerful.

As an advocate I am mistakenly branded as angry. But I use my voice to assert that I am not angry and I don’t apologize for creating a place in this movement to lift up all people. I refuse to apologize for not living in fear as a black woman living with HIV. In fact, I spent the first 25 years of my life living in silence. But when I learned of my HIV status, I found my voice.  As I fought for my life, I learned to raise my voice and walk in authority.  This authority came not only from learning about my HIV status but from a newly acquired education, and the strength of overcoming low self-esteem, bad relationships, poor education, and cocaine addiction.

Mistakenly, some would suggest that this authority has given me the label of being vain, but as I walk in authority, I feel immense pride – not vanity. I would never have imagined that for all my trials I would now be living drug free for 29 years, be happily married, be a mother, be a grandmother, and be a great-grandmother. I love that I am a friend, a mentor, an entrepreneur but most importantly I love that I am me.

I have learned to give of myself freely and I believe that as people of color living with HIV it is time to stop whispering simply because others might be uncomfortable when they hear our voices. I know firsthand that when we use our voices we gain power and can create change.  For those of us of color and living with HIV finding our voices isn’t easy – but it’s important that we do so in order to create the change we want to see in this world.

I came to NMAC with the understanding that the shoes I had to fill were huge. To be honest, I never considered myself in such a partnership with NMAC. In 2012 I started a new chapter in life when I co-founded Ribbon Consulting Group with the thought that I would step back into the movement and allow others to ascend by doing behind the scenes work with national HIV partners such as NMAC.

I believe, unlike ever before, it is imperative once again for people of color living with HIV to be intentional voices in HIV leadership. When it comes the question to how we can support our needs and others living with HIV we can provide our own answers. We must raise our voices and be silenced no more. That’s why we created the Building Leaders of Color (BLOC) Initiative.

BLOC is the first program of its kind. It is designed to elevate, enhance, and create leadership opportunities specifically for and by people of color living with HIV. BLOC is a HRSA funded cooperative agreement that engages people of color living with HIV to be full, active, and engaged participants in planning bodies, medical and support care teams, boards of directors, and other efforts to address the National HIV/AIDS Strategy Goals.

It’s been a few months since I stepped into a new opportunity to partner with NMAC as a consultant to head up NMAC’s Leadership Pipeline Department. A major part of this position in leading the BLOC. NMAC partners with PWN-USA, THRIVE SS Transgender Law Center (Positively Trans), and the US People Living with HIV Caucus – all of which are nationally recognized coalitions and PLHIV networks to make and carry out the program goals of BLOC.

When I was approached by NMAC, I knew this was a call from the universe to continue working in the movement. I have always understood the role of a leader and many of you in the community have helped shape me over the past 26 years. Over the past few months NMAC staff and partners have embraced me back to the front lines. I have found that Paul and other NMAC team members truly value my life lessons and experiences, and I value their mentorship in this new role as we work side by side to give voice to people of color living with HIV.

Yours in the Struggle,

Linda H. Scruggs
lscruggs@nmac.org
Acting Director of the Leadership Pipeline

PS: This year we invite Ryan White HIV/AIDS Programs Part A & B recipients and graduates from the Regional Trainings to apply for our BLOC Training of Trainers (TOT) Training Institute to be held Aug. 6-11, 2017.  Participation is limited and applications are due July 17, 2017. To learn more about the program and the application process please visit us here.

The Urgency of Now: The Real Cost of HIV Testing

The Urgency of Now: The Real Cost of HIV Testing

Today, NMAC recognizes National HIV Testing Day. For 30 years, we have advocated that efficient, effective, and inexpensive HIV testing be made available to all communities, especially to communities of color. This year’s theme for National HIV Testing Day is Test Your Way. Do It Today. While innovative treatment options such as Pre-Exposure Prophylaxis (PrEP) and Treatment as Prevention (TasP) are leading pathways to end the epidemic, knowing one’s status is still a vital step in the HIV health care continuum.

While great strides in HIV prevention and treatment have been made, HIV is still a public health crisis. Today, more than 1.1 million people in the United States are living with HIVand nearly one out of seven of them is unaware of their status. We have the tools to end the epidemic, but it is vital that our movement receive the funds it needs to save lives.

When considering the long-term financial costs of HIV, it’s important to understand that preventing HIV is more cost-effective than subsidizing the cost of someone’s lifetime HIV treatment. Despite this reality, this Administration has proposed budget cuts that would result in at least 1,000,000 fewer HIV tests to be performed each year – meaning that thousands of people will be unaware of their HIV status and, as a result, increase their risk for HIV and/or fail to start treatment altogether. The fact is: testing is essential.

So, today, register for our HIV/STI Action Day being held on Wednesday, September 6, and meet with your member of Congress. Now is the time for you to demand that they save our services. Our movement must work together to ensure that the costs for these life-saving services are not cut.

Yours in the Struggle,

Daniel Pino
202.853.0021

USCA Scholarship Deadline – June 30, 2017

USCA Scholarship Deadline – June 30, 2017

The 2017 United States Conference on AIDS scholarship deadline is June 30th.  This year, NMAC has set aside a special amount of scholarships for residents of the following cities and states.  If you know any HIV leaders who live in these areas, please encourage them to apply.  NMAC will waive the membership requirement when applying from these regions:

States

  • Missouri
  • New Hampshire
  • Rhode Island
  • South Carolina
  • West Virginia

Cities

  • Commerce, CA
  • New Haven, CT
  • Doral and Naples, FL
  • Boise, Idaho Falls, Twin Falls, Pocatello, ID
  • Cambridge and Framingham, MA
  • Morristown, NJ
  • Midwest City, Norman, Duncan, Lawton, Ardmore, OK
  • Allentown, Hamburg, Hershey, Annville PA
  • Vancouver, Chehalis, WA
  • Madison and Beloit, WI

We are prioritizing these regions because they represent the states and districts of key members of Congress. No government or corporate support will be used to fund these scholarships. These awards are financed from the proceeds of the sale of NMAC’s corporate headquarters.

In honor of our 30th Anniversary, NMAC has committed to give out 330 scholarships.  230 scholarships for USCA and 100 scholarships for the Biomedical HIV Prevention Summit in December.  Additionally, we have a special $30 membership for youth and people living with HIV.

Our movement is in a critical fight for funding.  This year all scholarship recipients are asked to participate in HIV/STI Action Day on September 6, 2017.  September is a critical month for the FY18 budget negotiations.  Our movement needs to show up and show out. Your movement needs you, please join us in Washington this September!

Yours in the struggle,

Paul Kawata
202.277.2777

Senate Health Care Bill is Disastrous for the HIV and STD Community

Senate Health Care Bill is Disastrous for the HIV and STD Community

 FOR IMMEDIATE RELEASE
June 23, 2017

CONTACT:
Kyle Taylor, Senior Manager, Communications, NASTAD
ktaylor@NASTAD.org | (202) 434.7134

Today, AIDS UnitedNASTAD, the National Coalition of STD DirectorsNMAC and The AIDS Institutejoin together to condemn the inhumane Senate healthcare bill, which will decimate Medicaid, change private insurance reforms that protect people living with or at risk of HIV and/or STDs, and undermines public health infrastructure.

The Senate health care bill will be catastrophic for our nation’s health care system. If passed, not only will people living with or at risk of HIV and STDs suffer, but our efforts to end the HIV and STD epidemics will be impeded,” stated Jesse Milan, Jr. President and CEO of AIDS United.

“The changes to Medicaid, including the repeal of the expansion and the drastic cuts to funding beginning in 2020 will harm people living with and at risk for HIV and STDs. This proposal guarantees limited access to care and benefits,” added David C. Harvey, Executive Director of the National Coalition of STD Directors.

“This bill creates a false narrative that says it will help people with pre-existing conditions, but instead it allows states to waive essential health benefits such as vital prescription drugs, mental and behavioral health services, and preventive services. These cuts would allow insurers to deny the services people who are living with and who are at risk for HIV and STIs need to stay healthy,” commented Paul Kawata, Executive Director of NMAC

“In addition, this bill eliminates funding for vital services provided by the Prevention and Public Health Fund, which funds 12% of the Centers for Disease Control and Prevention’s budget beginning in FY2018, just over three months away. This will decimate the federal government’s response to public health issues, including HIV and other STDs, and exacerbate the cuts proposed in the FY2018 President’s Budget,” observed Michael Ruppal, Executive Director of The AIDS Institute.

“We call on the Senate to reject this bill and protect people living with or at risk of HIV and STDs. The Senate must keep its promise to the American people and protect their care,” finished Murray C. Penner, Executive Director of NASTAD.

 

AIDS United (AU), NASTAD, the National Coalition of STD Directors (NCSD), NMAC, and The AIDS Institute (TAI) are national non-partisan, non-profit organizations focused on ending HIV in the U.S. They have been working in partnership to identify and share resources to sustain successes and progress we have made in HIV and STD prevention, care and treatment in the United States.

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NMAC Stands with Planned Parenthood

Planned Parenthood and NMAC are working together to gather sign-ons for a letter from the HIV community to oppose harmful laws such as H.R. 1628. If passed, these pieces of legislation would not only radically roll back access to quality, affordable health coverage for millions of people but also needlessly bar Medicaid patients across the country from using their coverage to access care from Planned Parenthood health centers. We must not defund Planned Parenthood.

Over the past 30 years we have made amazing gains in the battle against HIV in women and girls as well as other people vulnerable to HIV. Thanks to organizations such as Planned Parenthood which have helped protect and deliver quality, compassionate care to millions of Americans, the number of new HIV diagnoses among women declined by 40% from 2005 – 2014.  Despite these gains, there is still significant work to be done for  Black Women and Latinas who continue to be disproportionately impacted by HIV.

The HIV community knows the powerful impact Planned Parenthood has in serving rural, low-income communities, and communities of color. That’s why NMAC is proud to stand with our partner and ally Planned Parenthood – a key provider of comprehensive health services for women. But in addition to healthcare coverage, Planned Parenthood provides essential HIV/STI education, prevention, testing, and linkages to care. Across the country Planned Parenthood centers have become a source of comprehensive HIV prevention that includes counseling and innovative prevention options like pre-exposure prophylaxis (PrEP).

Together, we are stronger together and we must urge the 115th Congress to support the millions of patients who depend on vital care from Planned Parenthood health centers. Sign on today and tell Congress to continue to fund their important work.  Thank you for everything that you do to end the epidemic and standing up for our allies as you know they  know they will stand up for us.

Yours in the struggle,


Paul Kawata
Executive Director

NMAC Recognizes Orlando United Day

Honoring Orlando United Day

June 12th has been designated as Orlando United Day.  On this day, we remember the 49 angels who were killed at the Pulse nightclub in Orlando. This was a deliberate attack on the LGBT community that must never be forgotten.

To show our support for Orlando and the LGBT community, NMAC is pleased to announce that we will hold the 2018 United States Conference on AIDS in Orlando on September 6-9, 2018.  Please save the date.

The 2018 meeting will highlight the contributions made by the LGBT community to our efforts in ending the epidemic.  Our community has suffered so many losses and we must stand together.

The 49 beautiful portraits in this e-newsletter were created by 49 different artists across the country.  Each portrait portrays someone who was killed in the Pulse shootings.  They are all on exhibit at the Terrace Gallery at Orlando City Hall from May 1 – June 14, 2017.

Yours in the struggle,

Board & Staff of NMAC
Stronger Together!

 

NMAC Honors National Caribbean-American HIV/AIDS Awareness Day

By Sable K. Nelson, Policy Analyst

The eighth day of Caribbean American Heritage Month is Caribbean-American HIV/AIDS Awareness Day (NCAHAAD). “NCAHAAD is a national mobilization effort designed to encourage Caribbean-American and Caribbean-born individuals, across the United States and its territories, to get educated, get tested, get treated, and get involved. It is also a time to reflect, memorialize, and show compassion for those infected or affected by HIV/AIDS. It is a day of hope for the future of a Caribbean and Caribbean American community with available preventive health care as a daily part of life and a Caribbean Diaspora free of AIDS.”

In some traditions, the number eight represents new beginnings.  This year’s Caribbean-American HIV/AIDS Awareness Day is very important. In the current environment in which global and domestic divestment in HIV prevention and treatment is proposed and the needs of the diverse Caribbean-American communities rise, it is imperative that we all renew our commitment to provide Caribbean-Americans with resources, HIV/AIDS health education, evaluation, and opportunities for involvement. In particular, our Puerto Rican brothers and sisters continue to face challenges as they seek access to HIV prevention and treatment.

TAKE ACTION: We encourage you to join us on HIV/STD Action Day this September 6th, the day prior to the start of the United States Conference on AIDS to ensure the voices of Caribbean-American are heard in the fight against HIV/AIDS. Register today, its free!  Congress will be in session on September 6th, so your U.S. Senators and U.S. Representatives can see and will hear you.

Yours in the Struggle,

Sable Nelson
Policy Analyst

USCA Updates and Deadlines!

Early Bird Registration
We realize that the cost of attending USCA might be prohibitive for many seeking to participate. As a result, USCA offers an Early Bird Registration Rate  that is available until Friday, June 9th. If that isn’t incentive enough, as an NMAC member you will receive a further discount on your early bird registration rate. Sign up to become an NMAC member at our special 30th Anniversary rate of $30.00 to be eligible for an even more reduced registration rate. You MUST register for USCA by Friday, June 9 to take advantage of any Early Bird Discounts.

Hotel Accommodations
This year’s USCA is going to be a fantastic event. Already, hundreds of people from across the country have taken advantage of our discounted conference hotel rates and the Marriott Marquis, Embassy Suites Convention Center, and Renaissance Washington hotels are sold out at the designated USCA rate. If you have not yet confirmed your hotel accommodations please visit the venue page for a full list of hotels that are in walking distance to the host hotel. Please note that we have not secured conference rates at these hotels and pricing may vary based upon room availability.

Exhibit Hall Sold-Out: Additional Promotional Opportunities Remain
The USCA exhibit hall is sold-out.  For a full listing of current exhibitors visit our website.  Even though the exhibit hall is sold out, it is not too late to promote your organization at USCA.  Additional promotional opportunities are available in the form of Program Book Ads as well as Banner Ads in the official Conference Mobile App.  Make sure to reserve your ad by Friday, June 9 to receive the reduced rate.

Tentative Listing of Workshops
We are more excited than ever for the diversity of programming featured at this year’s USCA. Thank you to everyone that participated in this year’s abstract process and coordinated pathway sessions.  Visit our agenda page to review a sampling of workshop listings spanning topics such as Healthcare Access, Gay Men, Biomedical HIV Prevention, Cis and Trans Women and many more.  Additional sessions will be added in the coming weeks!

As you can tell, we are so excited to have you join us this September 7 – 10 in Washington, DC for what is already shaping up to be a transformative event. This movement is your movement and we cannot do the work to end the epidemic without you or your leadership. Should you have any questions on these items or anything regarding the 2017 USCA please email conferences@nmac.org.

Yours in the struggle,

Tara Barnes-Darby
Director, Conferences Division
conferences@nmac.org

Resilience: A Reflection on HIV Long Term Survivors Day

Resilience

By Fernando De Hoyos · NMAC Treatment Coordinator

Every year we come together on this day to honor the lives and struggles of Long-Term Survivors of HIV and AIDS. For me, everyone who was old enough to remember the early days of the epidemic is a long-term survivor regardless of HIV status. Countless allies living without the virus have been side by side with us along this journey. It was a time like no other in US history. June 5th was chosen because on this day, in 1981, the Center for Disease Control (CDC) first announced the “mysterious cancer” that was killing gay men around the country. Therefore, this day is a national day of remembrance and sharing our stories of resilience and survival, to document them for posterity.

I have told my story many times, so I want to talk about this year’s theme: “Resilience”. As a long-term survivor, I know resilience very well. Resilience is the ability to cope with adversity and to adapt well to tragedies, traumas, threats or severe stress. Being resilient does not mean not feeling discomfort, emotional pain, or difficulty in adversity. However, people living with HIV are usually able to overcome their diagnosis and adapt well over time. Resilience involves a series of behaviors and ways of thinking that anyone can learn and develop. I believe resilient people have three main characteristics: Know how to accept reality as it is; Have a deep belief that life makes sense; And have an unwavering ability to adapt to almost anything, often making the best out of it.

Resilient people usually possess a good dosage of realistic optimism. A positive vision of the future without being carried away by unreality or fantasies. Our perceptions and thoughts influence the way we deal with stress and adversity. We don’t run away from problems but face them head on and seek creative and innovative solutions. It involves seeing problems as challenges that we can overcome and not as terrible threats. Challenges are opportunities for learning and growing. I think blessings sometimes come in ugly packages, but what is inside could be the gift of a lifetime. “We are shaped by our thoughts; we become what we think.”– Buddha.

Which takes me to Gratefulness. Gratitude is a major contributor to resilience. When we focus on what we have, we realize that what we might be missing is not as important. It allows us to focus on life from a place of abundance versus a place of deficit. Gratitude improves physical and psychological health. Studies have shown that people living with HIV who practice gratefulness are more likely to take care of their heath, exercise and have good medication adherence. Developing an attitude of gratitude is one of the simplest ways to improve quality of life and sense of wellbeing.

Life is a blessing, with all the good and the not so good. The notion that whatever our journey might be, is unique and wonderful as it is. This is what makes life worth living. We just must be present to enjoy it, and the present moment is a gift, that’s why is called The Present. Please join us in raising awareness about HIV Long-Term Survivors contributions and accomplishments, as well as needs, issues, and journeys.

Yours in the Struggle,

Fernando De Hoyos
Treatment Coordinator

NMAC Welcomes the 2017 Youth Initiative Scholars!

NMAC Welcomes the 2017 Youth Initiative Scholars!

On behalf of NMAC, our funders: ViiV Healthcare and The Magic Johnson Foundation, and our collaborative partner: Advocates for Youth, we are pleased to announce the 2017 Youth Initiative Scholars! This program empowers young leaders in the HIV community with leadership skills, and  improves their HIV and public health literacy so that they can bring back and apply within their communities and organizations.

The 2017 Youth Initiative, now in its seventh year, brings together the next generation of leaders ages 18–25 (known as Youth Scholars) to participate in a seven-month, comprehensive program to help end the HIV epidemic in the U.S. As part of this program, Youth Scholars will gain opportunities to develop leadership, increase their knowledge, and build confidence while integrating key youth-specific messaging in local, state and national HIV/AIDS programs and advocacy agendas.

The Youth Scholars will also attend the U.S. Conference on AIDS (#2017USCA), held September 7-10 in Washington, DC. During the conference, Youth Scholars will participate in sessions meant to advance their leadership skills, build confidence, and learn new ways to prioritize youth within HIV/AIDS programs and policies in their communities.

Congratulations to the following scholars for their acceptance into the 2017 Youth Initiative Program! Note: This list includes scholars confirmed as of May 23rd, 2017.
LeAndrae Blackman, Chicago, IL
Corey Clark, Milwaukee, WI
Richard Elliott, Asbury Park, NJ
Syndi Gonzalez Negron, Bayamon, PR
Joseph Gray, Fair Oaks, CA
Khayree Gray, Oakland, CA
Deitrick Greer, IN
Daequan Hargraves, Decatur, GA
Jessica Harvey, Houston, TX
Danne’ Hughes, Houston, TX
Farah Jeune, Quincy, MA
Jonquil Johnson, North Charleston, SC
Yesi Koopman, San Francisco, CA
Tiffany Marrero, Ocala, FL
Michael Moore, Daytona Beach, FL
Julius Pikes-Prince, Daly City, CA
Tapakorn Prasertsith, Oakland, CAL
Nyjah Pringle, Newburgh, NY
Derrell Richardson, Washington, DC
Stacy-ann Rowe, Washington, DC
Pierre Smith, Detroit, MI
Zion Sylvester, Fort Lauderdale, FL
Levonte Williamson, TN
Isa Wrenn-Jones, Jackson, MS
Yours in the Struggle,
Linda Scruggs
Acting Director, Leadership Pipeline