Click the link to read a great summary for the day's tweets on Storify!
https://storify.com/SaveRyanWhiteD/saveryanwhitepartd-day-1-of-aids-watch
Monday, April 28, 2014
Advocacy at its finest: 30 for 30, PWN, and others work hard to #SaveRyanWhitePartD on 1st day of AIDS Watch!
The first day of AIDS Watch was a very productive one for Part D advocacy. A number of advocates involved with the Save Ryan White Part D movement and like-minded allies led a number of activities at AIDS Watch to oppose the elimination and call attention to the needs of the population Part D serves--women, infants, children, youth (which includes teens and young adults), and their family members/caregivers. The day prior to the beginning of AIDS Watch, Positive Women's Network unveiled a hashtag that would be used to follow women-centered AIDS Watch events, #pwnspeaks, and also welcomed and oriented a number of new and returning AIDS Watch attendees interested in women's issues as well as Part D advocacy.
The morning of AIDS Watch was kicked off with a breakfast for attendees, followed by an opening speech by Douglas Brooks, the new Director of the Office of National AIDS Policy. As an openly HIV+ individual, his appointment to this position is significant to many. Brooks emphasized the President and ONAP's commitment to PLHIV, and highlighted accomplishments as well as challenges and goals.
Next, two panels were held to provide updates for pertinent HIV policy issues.
The first panel addressed the Ryan White CARE Act (Ann Lefert, NASTAD), the Affordable Care Act (Malinda Ellwood, TAEP), and HIV Criminalization (Robert Suttle, Sero Project).
The second panel addressed Comprehensive Sex Education (Jesseca Boyer, SIECUS), Stable Housing (Nancy Bernstine, NAHC), Syringe Exchange (Bill McColl, AIDS United), and Budget & Appropriations (Donna Crews, AIDS United).
Through the opening and both panels, advocates incorporated the voices and concerns of the Part D population into all discussions and Q&A: specifically talking about Part D during the Ryan White CARE Act panel; discussing gaps that may remain for vulnerable groups even with ACA implementation; sharing data related to sex education and youth outcomes, etc.
In addition, social media was all ablaze, with positive women leading the pack in terms of tweeting and posting status updates on relevant AIDS Watch happenings, statistics, quotes, thoughts, and ideas.
After the policy briefings, Naina Khanna, executive director of Positive Women's Network-USA co-hosted a training with John Peller of AFC on how PLHIV craft and share their personal stories as a tool for advocacy.
After lunch, the 30 for 30 Campaign led a #SaveRyanWhitePartD panel that allowed positive women, allies, and providers to discuss the elimination and consolidation with HIV/AIDS Bureau (HAB) and Health Resources and Services Administration (HRSA) officials. It was a pleasant surprise to have Douglas Brooks attend this important meeting about Part D.
The 30 for 30 advocates were ON FIRE! They spoke candidly about the impact of Ryan White Part D on their personal lives and communities, and they raised important questions and concerns. In turn, HRSA listened and stated their position. One important point that was raised by HRSA is that Part D providers need to find a more concrete way to "prove" the effect of their programs, documenting how they support linkage and retention into medical care.
Overall, the meeting was extremely productive, and illustrated the strength of advocates when we unite, as we did today to Save Our Services! And with regular social media updates that were frequently retweeted and shared throughout the meeting, the advocates present were intentional about keeping the community informed whether or not they were in attendance at AIDS Watch! We have created a Storify to serve a "tweet summary" of the most salient updates separately for those interested.
Tonight's AIDS Watch activities conclude with an additional briefing as well as an award ceremony to honor two outstanding public officials: US Representative Henry Waxman, US Delegate Donna Christensen, and two outstanding community leaders: Robert Suttle and Tre Alexander.
Tomorrow there are additional opportunities to advocate and work to #SaveRyanWhitePartD through a listening session and legislative visits on the Hill to the offices of Congress officials who have the power to stop this elimination when they begin budget deliberations next month!
Stay tuned for tomorrow's news! We are so proud of our diverse, passionate, motivated advocates who are standing up for women, youth, and families to #SaveRyanWhitePartD!
The morning of AIDS Watch was kicked off with a breakfast for attendees, followed by an opening speech by Douglas Brooks, the new Director of the Office of National AIDS Policy. As an openly HIV+ individual, his appointment to this position is significant to many. Brooks emphasized the President and ONAP's commitment to PLHIV, and highlighted accomplishments as well as challenges and goals.
Next, two panels were held to provide updates for pertinent HIV policy issues.
The first panel addressed the Ryan White CARE Act (Ann Lefert, NASTAD), the Affordable Care Act (Malinda Ellwood, TAEP), and HIV Criminalization (Robert Suttle, Sero Project).
The second panel addressed Comprehensive Sex Education (Jesseca Boyer, SIECUS), Stable Housing (Nancy Bernstine, NAHC), Syringe Exchange (Bill McColl, AIDS United), and Budget & Appropriations (Donna Crews, AIDS United).
Through the opening and both panels, advocates incorporated the voices and concerns of the Part D population into all discussions and Q&A: specifically talking about Part D during the Ryan White CARE Act panel; discussing gaps that may remain for vulnerable groups even with ACA implementation; sharing data related to sex education and youth outcomes, etc.
In addition, social media was all ablaze, with positive women leading the pack in terms of tweeting and posting status updates on relevant AIDS Watch happenings, statistics, quotes, thoughts, and ideas.
After the policy briefings, Naina Khanna, executive director of Positive Women's Network-USA co-hosted a training with John Peller of AFC on how PLHIV craft and share their personal stories as a tool for advocacy.
After lunch, the 30 for 30 Campaign led a #SaveRyanWhitePartD panel that allowed positive women, allies, and providers to discuss the elimination and consolidation with HIV/AIDS Bureau (HAB) and Health Resources and Services Administration (HRSA) officials. It was a pleasant surprise to have Douglas Brooks attend this important meeting about Part D.
The 30 for 30 advocates were ON FIRE! They spoke candidly about the impact of Ryan White Part D on their personal lives and communities, and they raised important questions and concerns. In turn, HRSA listened and stated their position. One important point that was raised by HRSA is that Part D providers need to find a more concrete way to "prove" the effect of their programs, documenting how they support linkage and retention into medical care.
Overall, the meeting was extremely productive, and illustrated the strength of advocates when we unite, as we did today to Save Our Services! And with regular social media updates that were frequently retweeted and shared throughout the meeting, the advocates present were intentional about keeping the community informed whether or not they were in attendance at AIDS Watch! We have created a Storify to serve a "tweet summary" of the most salient updates separately for those interested.
Tonight's AIDS Watch activities conclude with an additional briefing as well as an award ceremony to honor two outstanding public officials: US Representative Henry Waxman, US Delegate Donna Christensen, and two outstanding community leaders: Robert Suttle and Tre Alexander.
Tomorrow there are additional opportunities to advocate and work to #SaveRyanWhitePartD through a listening session and legislative visits on the Hill to the offices of Congress officials who have the power to stop this elimination when they begin budget deliberations next month!
Stay tuned for tomorrow's news! We are so proud of our diverse, passionate, motivated advocates who are standing up for women, youth, and families to #SaveRyanWhitePartD!
Sunday, April 27, 2014
PLHIV and Allies Storm Washington DC for AIDS Watch 2014, April 28-30, 2014
(This post is derived in its entirety from an article in the Examiner, available at:
Saturday, April 26, 2014
HIV/AIDS Bureau and HRSA Host Conference Calls Regarding Consolidation of Ryan White Parts C and D
On April 23 and April 24, 2014, the HIV/AIDS Bureau and the Health Resources and Services Administration hosted two conference calls/webinars: one for Ryan White Part D grantees and one for Ryan White Part C grantees. The title of the calls was "Discussion of Critical Elements for the Funding Opportunity Announcement (FOA)."
Hosted by Laura Cheever, MD (Associate Director), Polly Ross, MD (Director), and Lynn Wegman, MPA (Deputy Director), the main two questions they wanted addressed on the call were:
1) What Part D services need to be included in the FOA, and
2) Documentation of service need.
It was made clear on the call that the "consolidated" program was going to more closely resemble Ryan White Part C than D, including the 75/25 requirement that does not currently apply to Part D. Vigorous discussion were held both days, and advocates involved in Part D advocacy attended both calls. The unclear, disappointing outcome only solidified the importance of pressing forward with our fight to #SaveRyanWhitePartD!
Slides from the webinars will be publicly available next week, and we will post them on our website.
Feedback/questions/comments about the elimination/consolidation proposal can be sent to the following email address: RWP2015PartCProposal@hrsa.gov
Advocates from the 30 for 30 Campaign plan to schedule a follow-up meeting with HRSA at AIDS Watch next week to address Part D's elimination in a more assertive manner. Stay tuned for details!
Hosted by Laura Cheever, MD (Associate Director), Polly Ross, MD (Director), and Lynn Wegman, MPA (Deputy Director), the main two questions they wanted addressed on the call were:
1) What Part D services need to be included in the FOA, and
2) Documentation of service need.
It was made clear on the call that the "consolidated" program was going to more closely resemble Ryan White Part C than D, including the 75/25 requirement that does not currently apply to Part D. Vigorous discussion were held both days, and advocates involved in Part D advocacy attended both calls. The unclear, disappointing outcome only solidified the importance of pressing forward with our fight to #SaveRyanWhitePartD!
Slides from the webinars will be publicly available next week, and we will post them on our website.
Feedback/questions/comments about the elimination/consolidation proposal can be sent to the following email address: RWP2015PartCProposal@hrsa.gov
We urge you to be VERY vocal about the loss of Part D! Part C and D grantees are not in a position to do so even if they staunchly oppose the changes, but we don't have such limitations! HRSA needs to know that WE oppose this!
Advocates from the 30 for 30 Campaign plan to schedule a follow-up meeting with HRSA at AIDS Watch next week to address Part D's elimination in a more assertive manner. Stay tuned for details!
Tuesday, April 22, 2014
Services for Women Are Not Disposable! PWN-USA Responds to the President’s Budget Proposal to Eliminate Ryan White Part D
(This post was derived entirely from the Positive Women's Network-USA website. The original post can be viewed here: http://pwnusa.wordpress.com/2014/03/26/pwn-usa-response-elimination-of-part-d/)
Services for Women Are Not Disposable! PWN-USA Responds to the President’s Budget Proposal to Eliminate Ryan White Part D
FOR IMMEDIATE RELEASE
Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174
March 26, 2014, New Orleans, LA - Just a few weeks ago, President Obama’s budget for 2015 was released, proposing the elimination of Part D of the Ryan White HIV/AIDS Program, which provides family-centered medical care and supportive services to women, infants, children and youth (WICY) living with HIV. Positive Women’s Network – USA is deeply concerned about this proposal and demands to see the evidence that drove this decision. Within the Ryan White Program, and across the spectrum of care for people living with HIV, services and care designed to meet women’s needs are not disposable.
Part D-funded programs provide coordinated care and support services to women living with HIV who may be juggling caregiving responsibilities to family members and children. While not all women living with HIV are eligible to receive care through Part D, more than 90,000 WICY access Part D services each year, according to a recent report by the AIDS Alliance for Women, Infants, Children, Youth and Families, which has criticized the proposed cuts. These programs are often entry points into care for underinsured women living with HIV — and for youth, the fastest growing population living with HIV in the U.S.
“As a woman living with HIV, it appears as if the unique, coordinated care and services provided by Part D programs are of little concern to the President and his Administration, when the reality is that these services are vital to our survival,” says Janet Kitchen, a member of PWN-USA who accessed case management and women’s health services through Part D early in her diagnosis, and now serves as a consumer quality advisor to a Part D program in Florida.
Under the President’s proposed 2015 budget, Ryan White Part C, which funds medical and early intervention services, would absorb Part D-allocated funds and receive a $4 million-dollar increase — but it’s unclear what portion of these dollars would fund services for WICY populations, and what range of services would be covered.
“There are usually specific gender-related experiences for women living with HIV that create unique barriers to accessing and remaining in care,” explains Susan Rodriguez, a woman living with HIV and founding director of SMART in New York City, which provides services to women and youth impacted by HIV. “These barriers are addressed in part through supportive services such as peer-based programming, transportation, housing, childcare, nutritional support and non-medical case management. These services are not extras — they are essential for many women to be able to receive consistent, high-quality health care.”
Programs delivering these services to women through Part D are precisely those at risk of being cut under the proposed elimination. Professional associations of medical providers, including the Ryan White Medical Providers Coalition and the HIV Medicine Association, have expressed grave concern about this change.
“Part D services helped me to save my life, and enabled me to be a leader in my community and a healthy mother to my children,” says Evany Turk, an Illinois-based PWN-USA member who works with University of Chicago’s Care 2 Prevent Program. Part D’s success in helping to drastically reduce rates of perinatal HIV transmission was made possible, in part, through coordinated care for pregnant women living with HIV and their families.
“When I was pregnant, a small agency funded by Part D sent a community worker to my home to help me learn how to take my meds so my baby would be free from HIV,” Turk recalls. “That same agency came out to help me give my baby HIV meds the first six weeks of his life to be certain he had no chance of contracting HIV. Eliminating these important Part D-funded outreach services will make it harder to retain women in care.”
Although the U.S. Centers for Disease Control and Prevention (CDC)’s HIV care continuum illustrates that only 41% of women living with HIV nationally are retained in care, 77% of female Ryan White Program clients stay in care, according to a recent report by the Health Resources and ServicesAdministration (HRSA). These successes must be maintained and expanded if the U.S. is to reach the National HIV/AIDS Strategy’s goals of increasing access to care and improving health outcomes for people living with HIV.
At a critical moment when the Affordable Care Act is already changing health care delivery for people living with HIV, the Ryan White Program needs to remain stable, not be taken apart. To that end, the 30 for 30 Campaign — a coalition of leaders working to ensure that the unique needs of women are addressed in the national HIV response — sent a letter last week to Dr. Laura Cheever, associate administrator of HRSA’s HIV/AIDS Bureau, requesting an explanation of the Administration’s rationale for the change, as well as the data which drove this decision.
“When I was pregnant and diagnosed with HIV, in 1991, there were no supportive services for women as well as their families,” says Margot Kirkland-Isaac, a Maryland-based PWN-USA member and past Part D program client. “I was admonished and advised to abort my daughter, and even threatened with the removal of my other children. Meanwhile, women in similar positions to mine would take the food they got from the food pantry for themselves and give it to their babies, and would literally starve to death. Twenty-three years later, we’re still fighting for the same thing.
“Far too many women do not seek or will fall out of care simply because programming does not provide a comprehensive, welcoming environment free of judgment, and one that addresses their specific needs,” says Kirkland-Isaac. These kinds of environments must become and remain the norm not just in Part D programs, but in all places where women living with HIV receive care.
PWN-USA urges stakeholders and allies to share this statement with your networks, and use our talking points to speak out about the proposed change. Check out the growing collection of Part D advocacy resources on our website; and sign up below to stay informed of our forward action to protect and augment care and services affecting women and young people living with HIV in the U.S.
The Women's Collective responds: "Ryan White Part D Funding: What about Women and Families?"
(This post was derived entirely from "Collectively Speaking," a weekly blog series of the Women's Collective. The post can be viewed here: http://thewomenscollective.wordpress.com/2014/04/15/ryan-white-part-d-funding-what-about-women-and-families/)
Ryan White Part D Funding: What about Women and Families?
On March 4, 2014 President Obama released his proposed budget for FY 2015. While his budget doesn’t go into effect without congressional approval, and it’s unlikely that congress will approve it without making any changes—the President made an important change in the way HIV related services are funded. The proposed budget condenses Part D of the Ryan White Program (which focuses on providing supportive services and medical services to women and families) into Part C (which provides comprehensive services without a focus on any specific group impacted by HIV/AIDS).
This proposal isn’t itself particularly concerning—Part D funds have always been very competitive and difficult to compete for so the compression of Part D into Part C may open up some new funding opportunities for community-based organizations (CBOs) that had been previously shut out of Part D funding. It also makes sense from the standpoint that there are less children being born with HIV and therefore a reduced need for funding those targeted services.
But we can’t forget about women and families.
The real concern with this proposal is the small part it plays in a larger movement in HIV/AIDS advocacy and funding that increasingly forgets about women and families and their unique needs and barriers. Language matters. Even though there are no funds being diverted out of the Ryan White program, removing “women and families” sends a problematic message about the focus of HIV/AIDS advocacy and services, who is living with HIV, and what their needs are. It lumps everyone living with HIV/AIDS into the same boat when they have distinctly different and complex needs—for women and families, those needs are often ignored.
There’s an argument that women and families served by Part D of the Ryan White program can get those same services through providers that receive Part C funding. That’s technically true. But those providers often don’t have woman-focused or youth-focused services that we know are effective. Women and youth may have a more difficult time articulating their needs and getting those needs met. As a woman-focused CBO, we have a first-hand view of what those needs are. Women aren’t just looking for access to quality health care or treatment. They’re looking for food so they can feed their families; housing so they can provide their families with stability and safety; employment so they can feel empowered to take care of themselves and their families; childcare so they can get to doctor’s appointments and to work; education so they can better themselves and set a good example for their families…
The needs of women go well beyond just taking medicine and adhering to treatment. As we lose focus on women and their needs, we are making it more difficult for them and families to enter and stay in care. The Women’s Collective urges the President and Congress to ensure that in the fight against HIV/AIDS, women are not left behind.
April 15, 2014
On March 4, 2014 President Obama released his proposed budget for FY 2015. While his budget doesn’t go into effect without congressional approval, and it’s unlikely that congress will approve it without making any changes—the President made an important change in the way HIV related services are funded. The proposed budget condenses Part D of the Ryan White Program (which focuses on providing supportive services and medical services to women and families) into Part C (which provides comprehensive services without a focus on any specific group impacted by HIV/AIDS).
This proposal isn’t itself particularly concerning—Part D funds have always been very competitive and difficult to compete for so the compression of Part D into Part C may open up some new funding opportunities for community-based organizations (CBOs) that had been previously shut out of Part D funding. It also makes sense from the standpoint that there are less children being born with HIV and therefore a reduced need for funding those targeted services.
But we can’t forget about women and families.
The real concern with this proposal is the small part it plays in a larger movement in HIV/AIDS advocacy and funding that increasingly forgets about women and families and their unique needs and barriers. Language matters. Even though there are no funds being diverted out of the Ryan White program, removing “women and families” sends a problematic message about the focus of HIV/AIDS advocacy and services, who is living with HIV, and what their needs are. It lumps everyone living with HIV/AIDS into the same boat when they have distinctly different and complex needs—for women and families, those needs are often ignored.
There’s an argument that women and families served by Part D of the Ryan White program can get those same services through providers that receive Part C funding. That’s technically true. But those providers often don’t have woman-focused or youth-focused services that we know are effective. Women and youth may have a more difficult time articulating their needs and getting those needs met. As a woman-focused CBO, we have a first-hand view of what those needs are. Women aren’t just looking for access to quality health care or treatment. They’re looking for food so they can feed their families; housing so they can provide their families with stability and safety; employment so they can feel empowered to take care of themselves and their families; childcare so they can get to doctor’s appointments and to work; education so they can better themselves and set a good example for their families…
The needs of women go well beyond just taking medicine and adhering to treatment. As we lose focus on women and their needs, we are making it more difficult for them and families to enter and stay in care. The Women’s Collective urges the President and Congress to ensure that in the fight against HIV/AIDS, women are not left behind.
April 15, 2014
SOS: Save Our SCIENCE by engaging scientific and research communities to join w/advocates to #SaveRyanWhitePartD!
SOS-Save Our Science! We are working to engage the HIV research and scientific communities into Part D advocacy.
Ryan White Part D explicitly mandates that its funded programs provide opportunities for women, infants, children, and youth to be voluntary participants in research of potential clinical benefit to individuals with HIV. This unique mandate honors Part D's history as a maternal/pediatric HIV research demonstration project. However, it also looks ahead toward a future cure, as many of the promising advances in HIV were birthed in the research realm.
Given that women, youth, and people of color are already severely underrepresented in domestic HIV clinical research, the changes to Part D could have a catastrophic effect on enrollment and retention of these groups.
With that in mind, we are strategically targeting various groups within the HIV research and HIV science communities in hopes that we can gain their support of our efforts to #SaveRyanWhitePartD.
SOS!
Ryan White Part D explicitly mandates that its funded programs provide opportunities for women, infants, children, and youth to be voluntary participants in research of potential clinical benefit to individuals with HIV. This unique mandate honors Part D's history as a maternal/pediatric HIV research demonstration project. However, it also looks ahead toward a future cure, as many of the promising advances in HIV were birthed in the research realm.
Given that women, youth, and people of color are already severely underrepresented in domestic HIV clinical research, the changes to Part D could have a catastrophic effect on enrollment and retention of these groups.
With that in mind, we are strategically targeting various groups within the HIV research and HIV science communities in hopes that we can gain their support of our efforts to #SaveRyanWhitePartD.
SOS!
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