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 shouldn’t 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!


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

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!