Wednesday, December 10, 2014

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 113th 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.


Monday, July 28, 2014

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/

Wednesday, June 11, 2014

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)

Wednesday, May 14, 2014

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  


Thursday, May 8, 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/

Monday, April 28, 2014

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!