Victory; Ryan White Part D is saved for FY 2015!!!!

Dec 23, 2014 — We won!!!! (For real this time!) In case you are not yet aware, on December 13, 2014, Congress approved the fiscal year 2015 funding bill (which contained several appropriations bills, including the Health Resources Services Administration that funds the Ryan White HIV/AIDS Program). 

In the bill (which is in effect until September 30, 2015), the proposal to consolidate Ryan White Part C and Ryan White Part D was rejected. Ryan White Part D is NOT eliminated; it has been funded as a stand-alone program as in previous years! 

Thank you everyone, for your assistance in retaining these crucial services for women, infants, children, youth, and families living with HIV! Nearly 10,000 of you signed our petition and countless others supported this important cause, and it made a difference! Thank you, thank you, thank you!!!

However, though Ryan White Part D is safe for this fiscal year, it is important that these important services are maintained beyond merely one year. There are many organizations that are heavily involved in advocating for this cause, including Positive Women's Network-USA; the AIDS United Public Policy Committee; the AIDS Alliance for Women, Infants, Children & Youth (a program of the AIDS Institute), and others. 

Please connect with an organization and stay informed so that we can #SaveRyanWhitePartD for the long term!

EXCITING SENATE APPROPRIATIONS NEWS About Ryan White Part D!!!!

EXCITING NEWS!!!! The US Senate Appropriations Committee has released its final Fiscal Year 2015 bill. On page 39 of the bill summary, it explicitly states that the committee rejects the consolidation of Ryan White Parts C and D as proposed by the administration. YAY!!! Though this bill still has to go before the house, this is extremely promising news. Thanks to all of you, we are one step closer to saving Ryan White Part D!


***Review the bill summary (on page 39) here

***Review the Fiscal Year 2015 Ryan White Part D "forecast" Funding Opportunity Announcement here

And below  is a press release issued today about all of this from The AIDS Institute:

National Policy Office - Washington, DC: 202-835-8373

Program and Administrative Office - Tampa, FL: 813-258-5929

For Immediate Release: 12.10.14  

---

Media Contact:  Carl Schmid: (202) 669-8267 cschmid@theaidsinstitute.org

                                   

CONGRESS MAINTAINS STRONG COMMITMENT

TO DOMESTIC HIV/AIDS PROGRAMS

Maintains Funding for Care and Treatment in the Ryan White Program &

HIV and Hepatitis Prevention at the CDC

Washington, DC – “The AIDS Institute commends the strong bi-partisan support to combatting HIV/AIDS in the United States by the U.S. Congress by maintaining funding for critically important domestic HIV programs for fiscal year 2015,” commented Carl Schmid, Deputy Executive Director of The AIDS Institute.  “Given the overall difficult budget restrictions, we are grateful for the Congress’ continued attention to preventing infectious diseases, such as HIV and hepatitis, and the need to provide care, treatment, and housing to people living with HIV/AIDS.”

The Ryan White HIV/AIDS Program provides some degree of health care, medications, and coverage completion services to roughly 554,000 low-income, uninsured, and underinsured individuals with HIV/AIDS.  The Congress is proposing to maintain funding at $2.3 billion in FY15, including $900 million for the AIDS Drug Assistance Program.  The continuing need for the Program was underscored by recent CDC data that found only 30 percent of people with HIV in the U.S. are virally suppressed, and only 37 percent are prescribed antiretroviral therapy (ART). 

The AIDS Institute is pleased the Congress rejected a proposal included in the President’s budget that would have eliminated dedicated funding for Part D of the Ryan White Program and transferred it to Part C.  Part D provides care and services for low-income women, infants, children, and youth with HIV and AIDS.

The Congress has agreed to allocate about $787 million for HIV prevention at the CDC, a very slight decrease from the prior year. There continue to be about 50,000 new HIV infections each year and that number has not decreased for many years. The federal government allocates only 4 percent of its domestic HIV spending to prevention.

Funding for Hepatitis Prevention at the CDC would remain at approximately $31 million. The AIDS Institute is extremely disappointed that the Congress did not increase its investment in hepatitis prevention given the magnitude of the number of infections in the U.S. and the need for increased surveillance, testing, and education in order to bring down the number of new infections and help people learn of their status.  Increased testing would help people with hepatitis B and C by linking them to care and treatment, and hopefully, cure them. 

Funding for the Housing Opportunities for People with AIDS (HOPWA) would continue to be funded at $330 million.  Ongoing medical research at the National Institutes of Health under the bill would increase slightly by only $150 million.  

Regrettably, the Congress is not following the scientific evidence but rather will continue the funding ban on syringe exchange programs and will fund abstinence-only until marriage programs.  

“Now that the 113^th Congress is coming to a close, The AIDS Institute must soon turn its attention to a new Congress,” commented Michael Ruppal, Executive Director of The  AIDS Institute.  “But before we do, we would like to recognize that Senate and House Labor, HHS, Education and Related Agencies Appropriation Subcommittee Chairmen Sen. Tom Harkin and Rep. Jack Kingston will be leaving the Congress.  The AIDS Institute thanks both of them for their service and leadership.  We particularly salute Chairman Harkin for being a long-time health care champion and a strong voice for people with disabilities, including people with HIV and AIDS.  We will certainly miss his leadership,” concluded Ruppal.

###

The AIDS Institute is a national nonprofit organization that promotes action for social change through public policy research, advocacy and education.

For more information and to become involved, visit www.TheAIDSInstitute.org or write to us at Info@theaidsinstitute.org, and follow The AIDS Institute on Twitter @AIDSAdvocacy and Facebook at www.facebook.com/The-AIDS-Institute.

IMPORTANT APOLOGY AND RETRACTION

They say that it takes a lot of courage to admit that you made a mistake; I hope that's true, because I made a huge mistake, but I don't feel courageous at all...I feel sick. But it needs to be done. So here goes.

Yesterday I posted (in a million places on the internet) a victory statement declaring that Ryan White Part D was safe for the 2015 fiscal year. I have since learned that this is not the case; no final decisions have been made surrounding Part D.

Early this morning, I discovered my error. But by then, I had already notified many of you (because I was so happy). Now I have the unpleasant task of having to retract my words.

I sincerely apologize for sharing inaccurate information. I pride myself on my honesty and my ethics, and it pains me deeply to have mislead anyone. I am sorry for anyone whom I have hurt or confused by my actions. I take full responsibility for my mistake.

Moving forward, I will refrain from making any unilateral official public statements related to Part D. I will entrust that duty to the many dedicated and competent organizations that are working hard to save this vital program.  :)

I will continue to advocate for this program, as it is an important one that has personally impacted my life and that of my family. I will continue to lend my support to advocacy efforts so that Ryan White Part D will indeed be saved - for real this time. I do believe that the "odds are in our favor" and that most likely the program will be secure. I can't wait until we know this as a 100% certainty.

So again, please pardon my huge faux pas. It was unintentional, but it was still my fault. I hope you all will KEEP UP your advocacy efforts surrounding Part D, as we are so close we can almost touch the victory. Together, let's make it happen!

Sincerely, Morénike

For info on Part D advocacy resources, visit: http://pwnusa.wordpress.com/take-action-2/

Exciting update!!!!!

Exciting update from Dr. Ivy Turnbull of the AIDS Alliance for Women, Infants, Children, Youth, and Families!!! See an excerpt of her communication below:

"GOOD NEWS!!!! While the full text of the Senate LHHS appropriations bill is not yet available, Part C and Part D are funded separately and are not consolidated as proposed in the President's FY 2015 budget request. Also page 15 of the attached tables show an increase in funding.  Once the bill language is released I will be able to provide additional information."

(Referenced tables not yet provided; seeking permission to post them)

The youth beg Congress to #SaveRyanWhitePartD!

Dear President Obama and Congressional People,

I don’t think that the government should cut off Ryan White Part D.  Even though I’m still a kid and may not understand everything about this, I know it’s not right.  Part D really helps people who have HIV and their families too.  I have learned a lot because of the programs under Part D and I don’t want this too all go away.  And I don’t want a bunch of people who work in Part D to lose their jobs either.  I want them to still be able to help me and help other people too. 

I don’t see why you guys want to cut this off and send us to another part of Ryan White that’s not even for us.  That will really confuse people and make them not even want to go to those places.  And how do you know that the people from the other part of Ryan White want to join hands and work with all the women and kids and young adults and stuff? That’s not fair to them to have to change what they’re good at when there’s already people who do that stuff.

Like right now, Part D is helping women all around.  Not trying to be mean, but just because girls and guys are equal doesn’t mean we are the same.  Plus, Part D has worked really hard to make sure that a lot of families keep the adults and kids safe.  Did you know that a lot of the kids are non HIV+ now?  And a lot of the parents are undetectable, like me?  That means they take their meds and they hardly have any HIV in their blood at all.  So they don’t make other people get HIV even though they are still positive.  Like when I have my kids, when I get older.  I bet they won’t have HIV, just me.

I don’t always feel like taking my meds, but I take them anyway.  My case manager is there for me.  For years, the other people in the Ryan White Part D programs supported me and they are there for me and my family.  I’ve watched some stuff and heard about stuff that makes me scared.  I’m a kid.  I know what we think and what’s going on.  You have no idea what problems might happen if we don’t have programs that are meant for young people, because we think different stuff and do different stuff.  We need our own attention.

Even if you are having some kind of problem, Part D shouldn’t be cut off.  That doesn’t mean you can fix stuff by putting us all in one group.  Keep us the way we are.  The only reason I know anything about being healthy with HIV is BECAUSE of Ryan White Part D.  If Ryan White Part D wasn’t there, me, my mom, and my whole family would just be lost.  I know what HIV meds do to me, what it affects me if I don’t take them, why I need to protect myself and other people and keep healthy.

I can’t do much, because I’m just a kid.  But you can do something.  We need to keep on having this. May 14, 2014  

Please help us contact Congress to #SaveRyanWhitePartD!!!

Hello friends,

In one short week (beginning May 15th), appropriations bills (including the HRSA budget containing the alarming changes to Ryan White Part D) will start being heard in the US Congressional Budget Committee until June 10, 2014. After that, the rest of June will be spent negotiating the appropriations bills, which will be finalized by June 30, 2014.

We have only this month and next to reach out to the President and Congress! After that, it will be TOO LATE to save this important program!

PLEASE consider helping us if you can. The Congressional Budget Committee members have a group email account in addition to their individual contact information. If you would take just a moment to visit the link below, you will find a sample letter that you can use as a guide (if you choose), and also a list of email addresses and other contact info that you can use if desired. Thank you for helping to#SaveRyanWhitePartD!
http://saveryanwhitepartd.org/contact-congress/

A Tweet summary of Part D highlights from AIDS Watch, Day One

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

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!

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:

http://www.examiner.com/article/three-questions-about-aids-watch-2014)

April 25, 2014

Candace Y.A. Montague

DC HIV and AIDS Examiner

The annual AIDS Watch assembly will begin on Monday, April 28th. AIDS Watch is a large constituent-based gathering that focuses on advocating for HIV/AIDS issues such as funding for programs and research, policy making, and community organizing. Advocates, grassroots organizations, and most importantly people living with HIV will be in attendance. The event includes policy briefing, scheduled visits with members of Congress, awards reception and a rally in Upper Senate Park. AIDS Watch was a long time event sponsored by the defunct National Association for People With AIDS (NAPWA). It is now organized by AIDS United, a DC-based advocacy group.

Michael Kaplan, President and CEO of AIDS United, answered three important questions about the potential impact of AIDS United and why selected groups should get involved.

1. What can a first timer expect at AIDS Watch 2014?

The experience can vary for so many, but undoubtedly, they will find themselves among several hundred HIV and AIDS advocates – many of whom are living with HIV, and others that work as allies in the field. They will get up-to-date training on HIV within the U.S., core policy issues, and how to effectively tell their stories to legislators. They will find themselves in all kinds of settings, from Congressional offices on Capitol Hill to a rally out in the park; and from a formal training at the FHI360 Conference Center to a Reception at the Rayburn Office building to honor retiring House Members Waxman and Christensen as well as community advocates, Robert Suttle and Tre Alexander.

2. How effective are these visits to Capitol Hill?

The visits can make a significant difference. The federal government invests well over $3 billion in discretionary programs to address HIV, the vast majority of which is spent in local communities to support programs related to HIV such as housing, case management, assistance with access to HIV-related treatment, and screening and prevention. Our legislators make decisions that impact hugely how we end this epidemic, and without the voices of those most impacted, we’re less likely to get the outcomes we need. We need the ban on using federal funds for syringe exchange programs removed, we need legislation that has already been introduced to fight HIV-criminalization passed, we need more up-to-date allocation of housing funds for people living with HIV, and so much more if we are to really meet the opportunity that is here to end AIDS. These issues are already being discussed on Capitol Hill, and constituents coming to meet with their elected officials, sharing information on how HIV impacts our lives, how Congress can make a difference, and how we vote makes a huge impact on what legislators decide to do.

3. Why should minorities (African-Americans, Hispanics, LBGT, Women) get involved with AIDS Watch?

The reality is, HIV disproportionately affects many of the most marginalized communities in our country. While there is not a demographic you can find that has not been touched by HIV – the huge and disproportionate impact on sexual minorities, communities of color, on women who have faced domestic violence and on the poor is undeniable. These are the very communities that often are the least served in federal policy, and the only way we change that is by ensuring our current legislators here from us; and that we work together to ensure that the legislative body more fairly reflects the beautiful diversity of our country.

Registration is still going on for AIDS Watch 2014. Seats fill up quickly. 

Click here for more information on the schedule of events and online registration.

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

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!

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

Posted on March 26, 2014 by pwnusa

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.

Sign Up: Part D Adv

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

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!

SOS: Save Our SYSTEM; help maintain Ryan White Programs as a whole!

SOS: Save Our System!

We are working to help ensure that the entire Ryan White HIV/AIDS System is maintained, beyond Part D.

Even with ACA implementation, Ryan White programs still fill critical needs and save lives.  Ryan White has an important role to play in helping to get and keep people in care

To this end, we are collaborating with the Center for Health Law & Policy Innovation at Harvard on their Ryan White Stories Project. This project intends to collect and personal testimonies from current and/or former consumers of Ryan White services that will be shared with key legislators and also online to demonstrate the importance of the program.

The first phase of the project will launch next week at AIDS Watch!
Would you like to contribute a personal story about utilizing Ryan White services? We'd love to hear from you!  SOS!

SOS: Save Our SERVICES w/legislative outreach

SOS: Save Our Services!!!

We are ramping up our legislative outreach advocacy to help #SaveRyanWhitePartD.  Some of the ways this is happening is through:

Letter writing campaigns: The Colorado chapter of Positive Women's USA has spearheaded a statewide letter writing campaign urging leadership from their governor as well as support from their Senators and Representatives in order to #SaveRyanWhitePartD!

Other states are needed to follow their great example; will yours be next? Join in!

In person visits: Board Members of the AIDS Alliance for Women, Infants, Children, Youth, & Families will be assembling on the Hill THIS WEEK for additional legislative visits to advocate for Part D.  

Additionally, numerous advocates will be speaking about the need to #SaveRyanWhitePartD when they assemble in DC for AIDS Watch next week!  If you are going, please help amplify their voices! SOS!

Petition delivery!
The Deputy Director of the AIDS Alliance for Women, Infants, Children, Youth, & Families will be hand-delivering our Change.org petition to key members of Congress!  Our goal is to get to 10,000 signatures before the delivery date and we're almost there; will you help us get the final 1,750 signatures by sharing the petition far and wide? SOS!

Sending out an SOS to #SaveRyanWhitePartD!

Sending out an SOS to ‪#‎SaveRyanWhitePartD‬!

In less than one month (beginning May 15th), the US House of Representatives can start hearing reports about annual appropriations bills--including the HRSA budget that contains the changes to Part D. And before June ends, a finalized budget will be passed. The time to #SaveRyanWhitePartD is growing short and we are entering crisis mode.

As such, we are excited to launch a new #SaveRyanWhitePartD campaign that we mentioned earlier, SOS. SOS is a three prong approach; as such, we will be describing each part in three different posts. There are many, many ways that you can help; feel free to contact us to learn more about how you and/or your community can get involved!

(Photo courtesy of http://3.bp.blogspot.com/)

Our New #SaveRyanWhitePartD Campaigns: "Why Ryan White Part D?" and "SOS"!

In our last post, we promised that we would later provide more details about our upcoming campaigns "Why Ryan White Part D?" and "SOS."

Today on Twitter we have began some of the "Why ‪#‎SaveRyanWhitePartD‬?" tweets, and beginning tomorrow we will be featuring at least one "Why #SaveRyanWhitePartD?" guest post every day on our blog!  The guest blogger will explain the important role that Ryan White Part D has played in their lives.  We will be featuring consumers, providers, and grantees in this campaign.

We will share about SOS in separate posts.  Stay tuned; you don't want to miss the exciting ways advocates all over the country are working to #SaveRyanWhitePartD!

What's Next?

The Flash Blog is over; what's next?"
-Anonymous commenter

Great question; glad you asked!

Yes, we are extremely proud of the success of yesterday's National Youth HIV & AIDS Awareness Day virtual protest #SaveRyanWhitePartD Flash Blog: No HIV+ Women & Children Left Behind!

(We had over 100 posts that throughout the entire day were featured on the Flash Blog site and cross-posted in various places on Twitter and Facebook, and we even attracted a little bit of media attention! And our Change.org petition has nearly 8,000 signatures!)

However, that's not the end. It's only the beginning.

We need to "keep at it" because we need Congress and the President to understand the importance of this issue. So, post-flash blog, our plans going forward include:

1. Heavily promoting the activities that various organizations in the community are doing specifically around Part D advocacy:

Holding a CAB meeting in your state related to Part D? Gearing up for a letter-writing campaign with your group? Got a community rally planned in your city? Were you recently quoted in a publication? Etc? We'll gladly post an announcement, the agenda, the minutes, pics, etc. This will not only help to feature your activities and demonstrate how many different people are involved, but it will help give other people ideas of what they can try to do in their areas as well.

2. Providing a central hub for sharing resources and communication:

Our official website is nearly completed and will be released in a few days. Aside from housing all of our social media endeavors in one place, it will also have direct links to all of the great organizations and individuals' pages that we've been in contact with concerning Part D advocacy. It will be updated regularly to add new people. We will also post links to helpful advocacy tips and toolkits.

3. Collaborating with existing leadership groups that are working in this issue:

We have connected with several experts in the field and are working cohesively to provide helpful feedback to them as well as incorporate their suggestions into our work. Many of them are established leaders in HIV advocacy, and it is both exciting and humbling to work with them! When possible, we will actively support their previously planned and future advocacy endeavors, i.e. AIDS Watch, conference calls, strategic meetings, etc.

4. Continuing to educate the public about this topic and obtain widespread support:

We will continue to speak at large and small venues, engage in targeted outreach, utilize list serves, and share on social media in order to inform the larger public about this issue and increase the size and reach of our allies. We will also continue to circulate the Change.org petition. There is strength in numbers!

5. Launching additional Save Ryan White Part D Initiative Campaigns:

We have upcoming campaigns in the works as well that we will be unveiling in the near future. One of them is a multi-media campaign led by Janet Kitchen of Florida entitled "We Exist." Others include a blog series tentatively named "Why Part D?" and a targeted outreach campaign entitled "S.O.S: Save Our Services/Science." We will reveal more details about all of these soon. We also hope to host additional conference calls as needed.

So...get ready, 'cause here we are! Thanks so much for your support thus far; with you on our team we will keep moving forward in our goal to #SaveRyanWhitePartD!

The Flash Blog is LIVE!

Gooood morning! Today is National Youth HIV & AIDS Awareness Day, and our Flash Blog is well underway! Posts will be added at numerous intervals throughout the day. Please check them out at: http://SaveRyanWhitePartDFlashBlog.blogspot.com

Thank you! No HIV + Women & Children Left Behind!

Press release: On 24th Anniversary of Ryan White’s Death, Advocates Express Concern Over Elimination of Ryan White Healthcare for Poor Women and Children

FOR IMMEDIATE RELEASE           

           

On 24^th Anniversary of Ryan White’s Death, Advocates Express Concern Over Elimination of Ryan White Healthcare for Poor Women and Children

Houston, TX – April 8, 2014 – Diagnosed with AIDS at the age of 13 years, Ryan White spent his short life advocating for acceptance and services for people living with HIV/AIDS until his death at the age of 18 years on April 8, 1990. 

A few months after his death, Congress passed a bill providing comprehensive healthcare and services to low-income Americans living with HIV, named the “Ryan White CARE Act” in Ryan’s honor.

Ryan White programs provide primary medical care, prescription drugs, and a variety of supportive services to half a million people each year.

Many are astonished at the recently proposed elimination of Ryan White Part D, which funds family-centered services for women, infants, children, and youth.

In addition to eliminating the program and consolidating it with another (Part C), the President's budget proposes an increase of $4 million to the Part C program in 2015.

“It is NOT acceptable to place HIV+ women and families on the chopping block to save a buck, “ says Morénike Onaiwu, a Part D consumer and social justice advocate.

“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 in a recent press release by Positive Women’s Network –USA expressing concern over the proposal.

Several organizations are hosting “Save Ryan White Part D!” meetings, peaceful rallies, legislative outreach, and virtual campaigns in  various cities and states.

Social media is also being used, including a Change.org petition with nearly 5,000 signatures to date and active Facebook, Twitter, Blogspot, and Google+ accounts.

An online protest “#SaveRyanWhitePartD: No HIV+ Women & Children Left Behind!” will occur on 4/10/2014 (National Youth HIV & AIDS Awareness Day).

Contacts:

(Main) Morénike Onaiwu, SaveRyanWhitePartD@gmail.com/281-698-0383

(Houston) Leslie Raneri, EsperanzadelAlma@gmail.com/281-698-0383

(Houston) Sister Mama Sonya, 3sispirit@gmail.com/832-277-1584

(Dallas) Marsha Jones, Marsha@theafiyacenter.org/214-699-7136

(Dallas) J. Raheem Harris, JRHarris.DallasAAG@gmail.com/214-624-4761

(Florida) Janet Kitchen, JanetKitchen1@aol.com/813-857-2974

(National/Policy) Ivy Turnbull, ITurnbull@aids-alliance.org/202-754-1858

(National/Policy) Olivia Ford, OFord.pwnusa@gmail.com/347-553-5174

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