Public Comment to the Houston Ryan White Planning Council on March 12, 2015
Hi. My name is Morénike, and I know many but not all of you; it's good to be here. Like you, I am part of the Houston Ryan White Planning Council, as I am an external member of the Comprehensive HIV Planning Committee. I am also involved in other forms of advocacy, and I am a member of a local HIV affected family. I am here today to express my grave concern and to solicit your assistance.
As many of you are aware, the presidents budget for the second year in a row has proposed to eliminate Ryan White Part D, consolidating it with Ryan White C. As most of you probably know, Ryan White Part D funds care and services for women, infants, children, teens, young adults, and caregivers while Ryan White Part C funds services for early capacity building and only intervention. While we are fortunate in the Houston EMA to have Ryan White Parts A, B, C, and D as well as MAI and state services funding, Ryan White Part D, which is administered by the Resource Group, comprises only a small part of the overall Ryan White funding in our area. However, this proposal represents more than just a potential loss of dollars. It sets a disturbing precedent of disregard and dismissal of marginalized subgroups within the HIV community.
Ryan White Part D has been existence since 1987. Many of its programs, including direct funding (in the past) of maternal/pediatric HIV research, are responsible for many of the gains in the field of HIV we now boast about today, such as reducing perinatal transmission of HIV by more than 90%, getting and retaining HIV+ women in care at rates more than double the national average, and stabilizing at risk women youth and families by providing critical support services to aid them in their time of need. We all know that Ryan White is a payer of last resort; so we already know that Part D is serving individuals who are experiencing economic hardship. Add to that the fact that youth and women in general - HIV positive ones in particular - are likely to face challenges such as unemployment, co-morbidities, virologic failure, abuse, substance use, and housing instability...and you can see that we are dealing with a population that is extremely vulnerable.
I would like you to consider the following points:
-Part D occupies less than 6% of the Ryan White budget; it is not a burden on the overall costs of Ryan White. So why is it being the one slated for elimination?
-HRSA has reduced and subsequently flat funded Ryan White Part D for several years in a row, despite more clients being served by the program.
-On a national level, Ryan White Part D alone serves more than a third of ALL HIV+ women receiving Ryan White services - despite being woefully underfunded.
-The Ryan White program, in part because of Part D, retains significantly more women in care than the national average.
-Part D has been a trailblazer - not only in Ryan White healthcare, but in healthcare overall. Its longtime use and promotion of patient and family-centered care with wraparound services was the predecessor for what we now know as the medical home model and similar forms of coordinated care which are widely accepted today as best practices.
-One justification for eliminating Part D that has been cited is to reduce administrative burdens for dually funded grantees. But you DO NOT dismantle a program because of administrative concerns; you find other solutions. Additionally, part of the reason there are currently so many grantees that are funded by both Part C and Part D was due to HRSA's choice a few years ago to re-compete the entire Ryan White Part D program. It is not Part D that should be blamed for the organizations HAB chose to select for funding.
-While it is important to have quality services for women and youth across all parts of Ryan White, there are unique factors in the legislation that allow Part D more flexibility in its rendering of services than other parts of Ryan White. Until similar or identical provisions can be made in other parts, Part D should remain distinct. It is not a "consolidation" of programs when you are simply taking all of the money from Part D and pouring it into another part that bears no similarity.
-Part D is the only part in the Ryan White program mandated to provide clients with information and access to HIV clinical trials. While care and prevention are all important and necessary for people living with HIV to have better health and life outcomes, care and prevention are not going to lead us to a cure. Only research can do that. While Part D no longer funds actual research itself as it did in the past, it does ensure that people living with HIV are aware of, and presumably meaningfully engaged in, the very research that impacts their lives. HIV+ people should have the opportunity to be front and center in ALL areas that affect their lives, including HIV clinical trials research. By devoting funds to ensuring that clients know about current research, Ryan White Part D make that happen.
-Ryan White Part D recognizes that HIV is not something that just happens to one person. When you were living with HIV, all of your loved ones are affected by HIV as well due to their concern for and relationship with you. Of course the primary focus is on the HIV+ individual, as it should be. However, strengthening the overall household helps the person living with HIV and provides them with a stronger foundation for stability, which helps facilitate viral suppression and retention in care.
-Ryan White Part D differs from other parts of Ryan White in its long time reliance upon community-based providers (not large medical clinics) as grantees and subgrantees. These programs have decades of experience providing care that is gender-specific and culturally sensitive to the Part D population and have established trusted, positive relationships with their communities as well as a demonstrated track record of success. Many of these providers are small nonprofits that look like the populations they serve as they often employ people from affected and underserved populations, including persons living with HIV. The potential loss of such important entities across the nation cannot be minimized.
-Some of the most respected voices in the HIV community and in other communities oppose this proposal, including AIDS United, the Ryan White Working Group, the Ryan White Medical Providers Association, HIV Prevention Justice Alliance, members of the President's Advisory Council on HIV/AIDS, the American Association of HIV Medicine, the American Association on Pediatrics, the American Psychological Association, the American Public Health Association, Human Rights Campaign, The AIDS Institute, Positive Women's Network-USA, the Elizabeth Glaser Pediatric AIDS Foundation, the AIDS Alliance, Campaign to End AIDS, ADAP Advocacy Association, Communities Advocating for Emergency AIDS Relief Coalition, the People Living with HIV Caucus, and countless others.
-It is too early into the implementation of the Affordable Care Act to make drastic changes such as this. As we have all seen in recent years, the Ryan White program has an important role to play in supporting the aims of the Affordable Care Act and assisting people as they acquire health plans and become acclimated to the new healthcare paradigm. We need more time to assess gaps and areas of improvement and to collect hard data. In the meantime, we should strive to preserve the status quo, not regress during this period of uncertainty.
-Changes such as this should NOT be done during budget appropriations; they should be done over time with broad, meaningful community input and during a transparent, collaborative reauthorization process. The way this proposal is being done is not an ethical way to make such a change. As it is critical that women and family-centered services are prioritized across the full Ryan White program, there may come a time in the future when Part D may indeed need to be absorbed into other parts of the Ryan White program - but that would only occur once changes are made to those programs to ensure that the concerns I've raised (and others) are adequately addressed, and the community would need to be actively involved throughout all steps of the process.
-When this exact same proposal was made last year, in fiscal year 2015, Congress vehemently rejected it and opted to keep Part D separate. This only became official in recent months. Now, just when we have come up for air and breathed a sigh of relief about saving Part D, we are again faced with this situation. While this administration has shown a sincere commitment to domestic HIV programs in a number of ways; persisting year after year with this proposal (essentially going after "low hanging fruit") undermines this. Why is the ONLY targeted Ryan White program for women and children the ones that are at risk? What type of message does that send? Not a good one.
-As a Part D consumer, I can personally attest to the value of the Ryan White Part D program. Locally, it supports quality case management and other services for ALL pediatric HIV patients at our chosen provider, even those with private or other insurance, through funds that employ dedicated, multilingual, culturally diverse staff. It supports peer based programming for HIV+ and affected youth, women, and families that my family has personally benefitted from, including individual and group counseling and the existence of a very active community advisory board that is a pluripotent services and research CAB. It provides consumer training and education on health literacy, self-advocacy, and more. It grooms leaders - our local Part D program has produced several advocates that have made a noticeable difference in their communities: advocating on Capitol Hill; leading local and state constituency groups; coordinating HIV ministries; chairing local and national HIV groups; even numerous committee and leadership roles in this very Planning Council.
-Finally, this proposal is concerning because it seems to imply that certain groups' needs don't need to be targeted effectively. Today it's Part D; what will it be tomorrow? Yes, there are less babies and children born positive in the US than in the past, which is a welcome change from the early years of the HIV era - but HIV+ children are not the only group Part D serves. It is frightening to consider who will be next to be cut. You may not be a woman or a youth living with or affected by HIV, and your family might not be impacted. But does that mean that you shouldn't worry. You should.
Today, I'm asking you to stand with us. Many of us are advocating for Ryan White Part D - JOIN us. There are many ways you can help. One way is to sign the letter you have before you that I've written. Please sign your name in the space provided and then print your name below. Underneath your name please also print your zip code, so that we can send it to the appropriate person based upon your district. If you want to remain anonymous, use initials. Feels free to add on to the letter if you wish, using the space st the bottom or the back of the letter. But please do something.
Another way that you can help us is to come out tomorrow night to a meeting that we are having at the Montrose Center to discuss Ryan White Part D and ways to advocate. You should have been provided with flyers; if not, please ask the Office of Support for one. ANYONE is welcome, and refreshments will be served.
Lastly, there will be an opportunity next Tuesday to advocate for Ryan White Part D using social media. We are hosting an all day social media advocacy event and will be providing a social media toolkit with sample tweets and messages for you to use. There is an open event invite on Facebook and the link has also been tweeted and posted on tumblr as well. You can find it online using the hashtag #SaveRyanWhitePartD. You can also visit my website at http://SaveRyanWhitePartD.org for information. We need to blanket social media on Tuesday with messages supporting the continuation of this vital program.
I know that the Council cannot take an official position on Part D...but each and every one of you can, as private citizens. I'm hoping that you will; I hope that I, and my family, can count on you. In closing, I will leave you with the words of Pastor Martin Niemiller:
"First they came for the Communists,
and I didn’t speak up,
because I wasn’t a Communist.
Then they came for the Jews,
and I didn’t speak up,
because I wasn’t a Jew.
Then they came for the Catholics,
and I didn’t speak up,
because I was a Protestant.
Then they came for me,
and by that time there was no one
left to speak up for me."