Strength in Story Sharing: Asian American, Native Hawaiian and Pacific Islander HIV/AIDS Awareness Day

May 16, 2014 in HIV/AIDS Awareness Days

Jacob_Smith_YangBy Jacob Smith Yang
Capacity Building Director
Asian & Pacific Islander American Health Forum

I confess. As a former executive director of a small organization in Boston, I once faced the prospect of Asian American, Native Hawaiian and Pacific Islander (AA and NHPI) HIV/AIDS Awareness Day with a twinge of dread each May 19.

Our organization worked with a number of AAs and NHPIs living with HIV/AIDS. Each of them had amazing, compelling stories of learning about their HIV statuses, struggling with disclosing their status, seeking and receiving support, and accessing care and services. My staff and I all knew firsthand the bravery and perseverance of each of these people.

Yet for the longest time, we couldn’t identify one person who was willing to speak publicly about her or his experiences. We knew that telling these stories had the potential to transform people’s hearts and minds about HIV/AIDS in our communities.

In fact, for many years we could not even successfully bring together the minimum of four AA and NHPI people living with HIV/AIDS (PLWHA) required for our Consumer Advisory Board (CAB). HIV positive members of our community would initially agree to come, but at the last minute, they would not attend. Talking to them, we realized that the idea of walking into a room and immediately disclosing such a private part of your life—your HIV status—to complete strangers was understandably daunting.

By 2005, things began changing. Groups like the Asian & Pacific Islander Wellness Center’s Banyan Tree Project (BTP) worked to raise the visibility of PLWHA as a way to decrease societal stigma. BTP brought a national media campaign and resources that we previously could only have dreamed of. Finally, we started to see a shift. In 2007, we had a consumer advisory board meeting where three AA and NHPI PLWHA attended! The fact that they were comfortable and trusted us to be supportive was gratifying. We strategized ways to decrease stigma and improve access to services. And together we came up with plans that worked for the community at large and for them—an important goal in all my work.

The following year, one of our CAB meeting attendees spoke at our local press conference for National AA and NHPI HIV/AIDS Awareness Day. He relayed his incredible journey, including delaying getting an HIV test that he long-suspected he needed until his illness and symptoms prevented him from walking. He could not face the prospect of what his neighbors and community might say about his family if they knew he was HIV positive. Others were inspired by his story and his courage and became committed to talking publicly about their lives.

While we have continued to make progress since then, there is still much to do. One in 4 AA and NHPI PLWHA are unaware they are infected with HIV. Thirty-six percent of HIV diagnoses among AAs and NHPIs progressed to AIDS in less than 12 months in 2010. Early testing and access to treatment can change that.

As capacity building director at the Asian & Pacific Islander American Health Forum, I work to make HIV/AIDS programs and organizations stronger. I work as part of a national program called Capacity for Health (C4H), which provides free capacity building assistance across the United States and its affiliated territories. Funded for more than 20 years by the CDC, C4H works with health departments, community-based organizations, and programs across all racial/ethnic groups to help reduce the spread of HIV/AIDS.

Each day, I carry with me the stories of AA and NHPI PLWHA from Boston, and how their lives have changed. I gain strength and perspective now hearing the
personal narratives of diverse PLWHA all around the country. These stories continue to move, surprise, frustrate, and ground me.

This May 19, I’m inspired by each and every one of the 9,672 AAs and NHPIs diagnosed with HIV/AIDS in this country. And I remain ever committed to helping all communities encourage people to learn their HIV status and find the care and support they need. They are not alone.

Jacob Smith Yang is the former executive director of Massachusetts Asian & Pacific Islanders (MAP) for Health, and has worked on HIV/AIDS issues since 1991.

Take Action During Viral Hepatitis Awareness Month

in Policy/Advocacy, Viral Hepatitis

Monique-Tula-webBy Monique Tula
Director, Capacity Building
AIDS United

Many people have referred to hepatitis C as the silent epidemic because millions of people have been infected, yet many are unaware. In an effort to raise awareness about hepatitis, May has been designated as Hepatitis Awareness Month and May 19th is specifically set aside as National Viral Hepatitis Testing Day. With that in mind, AIDS United encourages people who are at risk, especially people with HIV, to get tested, and for those who are positive to learn more about all the treatment options available to them. AU also urges health care providers and HIV community based organizations to take aggressive action to educate patients and clients about chronic viral hepatitis, including where to get screened and how to access treatment and support.

Following in the footsteps of HIV advocates who developed the National HIV/AIDS Strategy and as part of Healthy People 2020, the US Department of Health and  Human Services recently updated its roadmap for improving viral hepatitis surveillance, screening, and treatment protocols. Together, the Action Plan for the Prevention, Care, and Treatment of Viral Hepatitis and the Affordable Care Act, can greatly improve access to high quality, state of the art treatment technologies that were previously untenable for many people living with HCV.

The updated plan noted recent developments in treatment research which has led to exciting new options for people living with HCV. The new drugs work better than current treatment strategies: they cure HCV more often, in less time, and have fewer side effects. Some experts call the new drugs “game changers,” and expect that they will greatly increase the number of Americans who seek treatment.

May2014 HCV-graph

As the chart indicates, there is a long way to go before we will begin to see a significant rise in the number of people living with HCV being treated for this  condition. But before a person can access treatment, they need to know their status. And once they know their status they need to be assured that they can access treatment when they’re ready. The US Preventive Services Taskforce and CDC both recommend “birth-cohort” and risk-based screening for chronic HCV infection. While these recommendations are intended to identify people with HCV and link them to care, it is unknown if a positive screening alone, is enough to motivate a person to seek care. In fact, a recent study suggests that the main barrier to seeking further care following a positive HCV test result is lack of health insurance[1].

But there is good news. The same study indicated that expanding healthcare coverage is likely to increase access to HCV-related care. ACA implementation may provide a mechanism to link previously uninsured people living with HCV to care and treatment. Previously, people with existing health problems were often unable to buy coverage and others were excluded from Medicaid. But because the ACA has barred these practices, enrollees with HCV are now eligible for coverage.

In addition to the enhanced Medicaid reimbursement rate for specific evaluation and management services, State Medicaid Health Home programs will also provide care coordination services like case management, referrals to social support services, and use of health information technology to high-need Medicaid beneficiaries with chronic conditions like HCV. As implementation moves forward, it will be important for advocacy groups to ensure state Medicaid officials are aware that viral hepatitis is an eligible condition for the program.

This year, we truly have something to celebrate during National Hepatitis Awareness Month given the advances in treatment protocols and meaningful gains in ensuring access to treatment through the ACA. But let’s not stop here. Let’s continue the momentum by educating people about and participating in local Hepatitis Testing Day events. The CDC has a great site that will help you find a local event or start your own. Perhaps most importantly, AIDS United urges you to get screened yourself if you think you may be at risk for viral hepatitis. Finally, the National Viral Hepatitis Roundtable is a fantastic resource where you can find the latest updates about viral hepatitis and how to get more involved in advocacy efforts. Visit their website, get educated, get screened, and join us in our fight to raise awareness about viral hepatitis!

You can help make a difference right now by calling your Members of Congress during the month of May – ideally on May 19, National Hepatitis Testing Day – and asking them to take legislative actions to advance the fight against viral hepatitis. For more details on this Action Alert, click here.

 


[1] Bridging the Gap between HCV Screening and Access to Care: Insights from National Health and Nutrition HCV Follow-up Study, 2001-2010. Ivo Ditah, MD, MPhil1; Taiwo Ngwa, MD2; Michael Charlton, MD3; and Patrick S. Kamath1. Division of 1Gastroenterology and Hepatology; 2Internal Medicine, Mayo Clinic, Rochester, MN; 3Hepatology and Liver Transplantation, Intermountain Medical Center, Salt Lake City, UT, United States.

From Colorado to Washington, DC: An Eye-Opening AIDSWatch Experience

May 12, 2014 in AIDSWatch, Policy/Advocacy

laurie-priddy-pwn-usa-website-photoBy Laurie Priddy
Western Region Coordinator,

Positive Women’s Network-USA – Colorado

I decided to join AIDSWatch 2014 after hearing women from Positive Women’s Network-USA-Colorado (PWN-USA-Colorado) discussing it back in December 2013. I was intrigued because it appeared to be something that would further my knowledge about policy, laws and the power of advocacy.

Sharing our experiences with legislators is imperative. Many times they receive letters without ever seeing us. It isn’t just the visual; it is the expression on our faces, the tone in our voices and the ability to engage our life experiences eye to eye. We break the vision in a legislator’s head of what people like us look like. Our humanness is revealed.

A month beforehand, I knew going to AIDSWatch would require me to suit up and remove the faded Levis and T-shirts that I feel comfortable in. I began looking for an outfit that would look like I could be taken seriously as I approached the suits on the Hill. I had my nails done so they didn’t look like I had just chopped wood or been digging into Mother Earth.

The clothes were in place; now to challenge the mind to retain the facts, the facts, the facts, as well as the personal experience.

The first night in D.C., I joined up with other powerful, fierce and confident women of PWN-USA at a restaurant. As the evening continued, the women from PWN-USA-Colorado energetically discussed our months of learning about the seven issues on the AIDSWatch policy agenda. Barb Cardell, Kari Hartel, Penny DeNoble, Rica Rodriguez, Diane Walker and I huddled around each other as if we were getting the plays for a football game. We were getting close to Monday’s game day. Sleepless night. Early morning.

barb_laurie_tiptonMonday began with us ladies taking a brisk walk to the conference center. The women were pumped up and ready to take on the day and our representatives. During the policy briefings, my head was reeling with concern as to whether I understood and could articulate the information. Sure this information was about issues that affect my life and that I have been living with for the last 25 years; but more important, it was about ENDING AIDS IN AMERICA, and the 1.1 million people living with HIV/AIDS in the U.S. My shoulders didn’t feel wide enough.

As my friend and mentor Barb Cardell and I began our trek to Representative Scott Tipton’s office, I wanted to jump out onto Connecticut Avenue and run. Between complete confidence from Barb and a cab driver reminding me that legislators put their pants on the same way we do, I felt like I had an astral projection right to the front door of Rep. Tipton’s office.

I need to tell you that, when you look at where I came from, where I was standing was one of those life-changing moments. I have always been wonderful at screaming, holding signs, putting friends’ ashes on the White House lawn. But today, I was a woman advocating in a professional manner.

We met with Rep. Tipton’s health expert and began our ask. We discussed the importance of progressive laws in the state of Colorado, such as comprehensive sex education, and that these laws need to be implemented on a federal level. During this meeting I could see in action the morning conference slide that listed the important steps of a Hill visit: A) organize your meeting; B) make it personal; C) do your homework; D) offer solutions; E) keep it short; F) make your ask (“will you support this” and then wait for the answer); G) follow up.

Each one of the women from our group in Colorado took the lead in other representatives’ offices. You were never alone in these meetings; you were backed by your sisters sitting at the same table with you, ready to share their input on something they had studied or even just for straight-out support. I felt so very proud seeing my sisters from PWN-USA-Colorado in action, sharing their knowledge with such poise and articulation. WOW!

Tuesday morning I woke up early to make sure I had a seat at the breakfast conference with Douglas Brooks, director of the Office of National AIDS Policy (ONAP). At this listening session, people living with HIV raised issues that would be taken back to the President. Discussion ranged from Ryan White Part D, to male heterosexual voices, to incarceration, to why we can’t change programs that have proven to work, to employment and labor.

This entire engagement raised the awareness for me that we are more than whiners and protesters; we are women living with HIV and participating in powerful change through our strong knowledge and voices, to ensure that we are part of shaping laws that affect our HIV community.

Many of us come from places where our voices never felt strong or where we could not ask for what we needed. I know this to be a myth. And I know that, when it comes to raising our voices for change, THE RIGHT TIME IS NOW!

Laurie Priddy is the Western Region Coordinator of PWN-USA-Colorado, one of six regional chapters of Positive Women’s Network – USA.

This blog post was adapted from a piece that originally appeared on PWN-USA’s website. Be sure to visit PWN-USA’s website and learn about all of their great work!

Watching AIDSWatch Change Lives

May 9, 2014 in Uncategorized

bernadette-webBy Bernadette Carriere
Pedro Zamora Public Policy Fellow, AIDS United

I didn’t know what to expect from AIDSWatch as a participant, but as an employee I realized early in my fellowship that it involved a lot of work. As a Pedro Zamora fellow working in the office of AIDS United, I saw firsthand the preparation that went into organizing this event. I answered some of the calls from scholarship participants and I got to witness the excitement in the office as the dates of AIDSWatch slowly approached. From the time I started my fellowship in late January, staff was already working diligently to plan fine details. So when the time finally arrived, I was hopeful that this event would be as successful as anticipated.

On Monday when I arrived at the training site, I was glad to see all of the participants excited and energized as they entered the conference space. They were eager to see old friends and meet new ones as I witnessed many hugs and handshakes being passed around the room. When the speakers began, they were equally enthused as they engaged participants on the epidemic, immediate needs and concerns, and our progress moving forward. As I sat in the room, I couldn’t help but get emotional as I thought about my aunt who passed away from complications related to AIDS.

It was not long ago that I had to witness one of the women who meant so much to me, fight for her life. She wanted to live… I got emotional because I was in a room surrounded by people I didn’t know, but I felt a sense of camaraderie. I knew my aunt would have loved to see so many people rally in one space to mobilize around an issue that affected her not only physically, but mentally. I envisioned her going around the room walking with her head held high because she would see that she was not in this fight alone. She and I, as a family, could have been in that room championing for this cause while representing so many people from our community. The selfish part of me shed a tear because I missed her, but I smiled as I realized that it is through her that I am able to live my life working on an issue that impacts the lives of so many.

Moved to Tears: A Blog from 2014 AIDSWatcher Ed Barron

May 2, 2014 in AIDSWatch

ed_barronBy Ed Barron
AIDSWatch 2014 Advocate, New Jersey

I have attended AIDSWatch in the past and was excited to be able to participate again. This time — more than before — I felt it important to put a face to AIDS. As a long term survivor having tested positive in 1986, I have survived the “Plague Years.” And though science has made many advances and we are surviving longer there is an even greater need for the Federal Government to finance support services, not only for the newly diagnosed but those of us that are still living. It is important for our lawmakers to realize we would like to live a full life as do all other people living in the United States. The issues me and my fellow advocates addressed are of utmost concern for all of us living with and affected by HIV in our country! This includes the Re-authorization of The Ryan White Program, the full implementation and support of the Affordable Care Act, resolving housing issues through programs like HOPWA (Housing Opportunities for People Living with AIDS), lifting the Federal ban on Syringe Exchange Programs, and repealing HIV discrimination laws. And as we approach the 2015 Budget and Appropriations, it is crucial that our concerns be put on the table. I believe we were successful in achieving that goal.

At one point I actually cried when I was speaking with the Congressman Rush Holt’s (D-NJ) representative. With his retirement, we are losing a great ally, and the compassion shown by his staff member moved me to tears.

The round table discussion facilitated by new Office of National AIDS Policy Director Douglas Brooks, was especially informative. Getting to know AIDS United Government Affairs Director Donna Crews as we waited to get into the room was a wonderful experience, as was connecting with Waheedah Shabazz-El of the Positive Woman’s Network. And what a gift it was to share a room with the one and only Michael Rajner, who shared so much of his experiences with me. And I can’t say enough about Deloris Dockrey from Hyacinth Foundation a true blessing. The awards presentation was not only inspiring but touching. I actually cried when Congressman Waxman spoke. Talking about his journey reminded me of how painful mine was in the beginning. The encouraging tales of the other recipients of the awards was inspiring. Moving me to tears yet again.

The accommodations were exceptional and I have written a letter to Kimpton Hotels who managed the host hotel the Palomar applauding there staff in doing a wonderful job during my stay. I did not hear a single complaint about the staff. My experience at AIDSWatch 2014 far exceeded anything I could have possibly expected. I look forward to participating again next year!

AIDSWatch Blog: Bringing My Personal Story to Capitol Hill

in AIDSWatch, Policy/Advocacy

Kayla Headshot

By Kayla Patterson
Pedro Zamora Public Policy Fellow, AIDS United

My father passed away from AIDS in the early 1990s. Since his death, sharing my story has been intimidating because of HIV/AIDS stigma. Whether it is the fear of judgment or the shame that society inadvertently makes people feel surrounding the disease, most people – me included – shut down and hide themselves. AIDSWatch is a forum that allows people living with HIV/AIDS to share their story with legislators so their voices can finally be heard.

I am rarely exposed to Southern California HIV community-specific concerns outside my bubble as a native Northern Californian. Thankfully, I attended three Hill meetings with a group of participants from San Diego that illuminated the daily battles their HIV communities face. I was not only educated on the issues that California faces from a positive person’s perspective, I was also inspired by their courage and strength. Many of them had never been to a meeting with a Congressional office, and I believe all of them felt that their voice was heard, making the entire planning process worth it. I attended four more meetings with the immensely talented and experienced Ernest Hopkins, Director of Legislative Affairs for the San Francisco AIDS Foundation. It was a privilege observing how he maneuvered meetings and communicated with staffers, and I learned many lessons that I will never forget moving forward in my career. Most of our meetings focused on the Housing Opportunities for Persons with AIDS (HOPWA) Program and the lack of affordable housing opportunities in the Bay Area, and many of the staffers assured us that their offices have prioritized affordable housing.

I was proud and honored to be a part of the AIDS United staff for AIDSWatch 2014. The event had such a positive impact on so many attendees. For the first time in many years, AIDS United provided hotel scholarships to many people living with HIV who would otherwise not be able to attend. The most fulfilling and motivating part of the event was witnessing how energized participants were to share their stories. I encourage everyone who participated to continue sharing their stories and inspire others, as you have for me, and continue the dialogue about HIV/AIDS. I look forward to next year and look to seeing even more new participants!