Monday, February 2, 2015

No, no, NO!!! Part D has been slated for elimination AGAIN!!!!

We are EXTREMELY disturbed to learn that the President's 2016 budget AGAIN proposes an elimination and consolidation of the Ryan White Part D program in Ryan White Part C!!! This is a travesty. Congress just rejected this proposal, and in a few short months we are being forced to contend with it yet again.

This eloquent Bailey House post from last year sums the current situation up beautifully:


“Women Hold Up Half the Sky” Except in HIV/AIDS policy, care, prevention and funding!

Posted on 03/10/2014 at 1:56 pm
women hold up half the sky nat women and girls HIV AIDS awareness day 2014
There is an old Chinese proverb that says, “Women hold up half the sky”. In 2014, I’d add, “Except in HIV/AIDS policy, prevention, strategies and care.” Women arenot, as many people like to say, the “new face of AIDS”. For over 32 years, women, especially black women and Latinas, have been infected with the HIV virus and many have transitioned to an AIDS diagnosis. But because of racism, sexism, socio-economic status, family responsibilities and the war against women’s reproductive health, many have been left behind.
Statistics from a 2010 Center for Disease Control and Prevention (CDC) report show that while there has been some decrease in new infections among women, they continue to be infected. “New HIV infections among women are primarily attributed to heterosexual contact (84% in 2010) or injection drug use (16% in 2010). Women accounted for 20% of estimated new HIV infections in 2010 and 24% of those living with HIV infection in 2009.” The CDC website contains a graphic on the page with its report, which states “Gay and bisexual men of all races are most severely affected by AIDS” – given that AIDS is the leading cause of death of young black women, it’s a shocking and insensitive statement by the leading government agency responsible for shaping HIV prevention strategy. Tragically it reflects a growing lack of concern about HIV-positive women and women affected by HIV/AIDS.
HIV-positive women and women affected by HIV/AIDS have been left behind in HIV/AIDS policy, prevention care and funding. The President’s 2010 National HIV/AIDS Strategy is silent regarding issues affecting women. Last week in the President’s 2015 budget, Ryan White Part D, one of the key sources of funding for programs for HIV-positive women and their families, was eliminated and folded into a broader category. A number of organizations in NYC and across the nation will lose their Ryan White Part D funds at a very critical time as the Affordable Care Act and Medicaid Redesign are changing the way women’s reproductive healthcare will be provided. Who will be left to help HIV-positive women navigate these changes?
As the CDC and pharmaceutical companies roll out promising new bio-medical prevention strategies, PrEP (pre-exposure prophylaxis, which has to be taken daily by the HIV-negative partner) and PeP (Post-exposure prophylaxis, often called the HIV “morning after” pill) women’s reproductive health is a mere footnote. In the recent “Partners” study, which demonstrates success of a PrEP drug, Truvada, in heterosexual and gay male couples where one partners is HIV-negative, women represented only 38% of the study participants. While there were some findings of lower efficacy in women, the researchers considered it statistically insignificant.
In contrast, the 2010 FEM-PrEP study, which was intended to measure the efficacy of PrEP for HIV-negative women, was stopped because the company monitoring the results determined that “it was highly unlikely that any protective effect of Truvada that might emerge would be enough to demonstrate a statistically significant benefit overall.” One of the reasons given was that HIV-negative women may be less adherent because of side effects, which include nausea and “an unexpected” drug interaction with women’s contraception which led to lower levels of hormones and less protection against unwanted pregnancy.
These findings are very disturbing when you consider that women often cannot negotiate “safer sex” for a whole host of reasons, like intimate partner violence, trauma, poverty, homelessness, survival sex and lack of access to condoms.  Even in the Partners study many women reported longer periods of “condomless sex” than their male counterparts — 3.5 years as compared with the 2.5 years reported by heterosexual men and 1.5 years by the gay men in the study.
Women living with HIV/AIDS and women affected by AIDS are an endangered group. Without polices, prevention strategies and care that focus on the unique needs of women including their biochemistry, reproductive health, emotional well-being, family and partner status, geography, and  socio-economic status, the HIV/AIDS epidemic will continue to be severe for them and their families. Isn’t it time for national HIV/AIDS policy, care and funding to recognize that women must be counted and heard?
Bailey House will continue to be in the vanguard of advocating for HIV-positive women and women affected by HIV/AIDS as a member of the steering committee of the “30 for 30” campaign. Together with HIV-positive women activists from around the nation as well as many organizations that serve women, we will fight to get and keep women on the national HIV/AIDS agenda and in national healthcare policy. We won’t stop until policy and practice acknowledge the unique needs of women and begin to count them in. If, as the Chinese proverb says, “women hold up half the sky,” then the sky will fall without us.

Tuesday, December 23, 2014

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

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!

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/