Sunday, February 15, 2015

The Women's Collective's Part D Statement

(This post was taken entirely from a post written by The Women's Collective, available HERE.)
President Obama’s FY2016 Budget Proposal to Consolidate Ryan White Parts C & D
Full Statement
Ryan White Part D provides life-saving family-centered primary and specialty medical care and support services, women, infants, children and youth living with HIV/AIDS. This component of the Ryan White program has invested much needed resources to build service provider capacity to ensure women have access to quality, culturally competent, linguistically appropriate core medical and support services so that they and their loved ones can enjoy healthy, meaningful and productive lives.
As the only AIDS Service organization in the District of Columbia solely dedicated to providing direct services for women living with and at risk for HIV, and their families, The Women’s Collective is once again deeply concerned the President’s FY 2016 budget proposes to consolidate Part C and Part D of the Ryan White with program. The President’s budget zeroes out Part D, for a reduction of $75,088,000 below the FY 2015 funding level. However, the President’s budget increases the Part C allocation by $79, 088,000. Presumably, this increase represents a transfer of the Part D monies of $75,088,000 and an increase of $400,000 above the FY 2015. If implemented without the requisite assurances, the proposed consolidation will dismantle the solid infrastructure Part D providers have built up in underserved urban and rural geographic areas where the HIV infections among women and co-morbidities are rapidly escalating.
In the District of Columbia (DC) women account for 27% of the HIV epidemic, with heterosexual sex as predominant mode of transmission; in DC Black women who reported heterosexual contact as the primary mode of transmission represent the second-largest group (16%), after Black MSM. There continues to be significant racial disparities; blacks are the disproportionally affected population, representing nearly 75% of new infections but only 47% of District residents. The HIV prevalence for black women (93%) was nearly 5 times greater than that of Hispanic women and nearly 25 times greater than that of white women. According to the President’s own Federal Interagency Working Group on the Intersection of HIV/AIDS, Violence against Women and Girls, and Gender-related Health Disparities, Intimate Partner Violence (IPV) and HIV are intersecting epidemics that have far-reaching health consequences for women in the United States, particularly for women of color, who already face a long list of health and social disparities. This situation calls for novel, but also immediate, ways to address gaps, and provide successful prevention & treatment for women along the continuum care. Now is not the time for this Administration that has made so much progress on HIV/AIDS to dismantle the Part D program.
The Women’s Collective serves women of color in the District and beyond. When clients walk through The Women’s Collective doors they are thinking about much more than their HIV care. All of these women have sexual and reproductive health rights; these women have faced childhood and adulthood trauma that probably put them at risk for HIV in the first place; they experience violence, they are homeless, they have little or no income. Many women learn they are HIV-positive during pregnancy, with Part D services ensuring that they were connected & retained in care.
Assurances
The American healthcare landscape has changed considerably in recent years, most significantly with the enactment of the Affordable Care Act. Mother-to child transmission has almost been completely eradicated, and treatment as prevention offers great promise to prevent transmission and improve health outcomes of women living with HIV. Even with these advancements, between 8,000 and 9, 000 HIV+ women become pregnant each year. The redirection of limited resources focused women, children, and youth appears misguided to us Should the proposed budget move forward, we demand assurances of sustained investment of Ryan White dollars in existing Part D grantees and the clients they serve.
1. Deliberate and specific language that protects Part D funds transferred to Pard C, so that these monies continue to be dedicated solely to women, children and youth.
2. Description of procedures and quality measures to ensure women will have access to and make use of services allocated for them.
3. Immediate consultation with all impacted by the proposed consolidation. Sadly, it is very clear that the Administration neither sought input nor informed partners before the proposal was included in the FY 2016 budget.
What steps will the White House, in in coordination with HRSA, take to explain the rationale for the consolidation to grantees and external community stakeholders?
What happens to all the Part D services that would not meet the program eligibility for consolidated Part C grant funding?
The Women’s Collective is advocating for the preservation of Ryan White in its entirety for a simple reason that we are witness to lives that have literally been salvaged because there has been a payer of last resort. A soon to be released Women’s Collective White Paper will outline policy priorities, informed be by the voices of the women we serve, to guide healthcare access policy for women living with HIV. Recommendations will consider new needs assessment data and address emerging needs that continue to be rooted in and perpetuated by racial, ethnic and gender based health inequities. We strongly urge HRSA/ HAB to consider our recommendations, and to meaningfully engage the diverse community of women, service providers, activists and policy advocates who are on the frontlines and serving and representing women who have rely on the Ryan White program.
Policy & Advocacy Department
1331 Rhode Island Avenue NE
Washington DC 20018
202-483-7003
Martha@womenscollective.org

Saturday, February 14, 2015

Join the #SaveRyanWhitePartD All-Day Twitter Bomb on March 17, 2015!!!

PLEASE join in a virtual all-day social media event happening the week after National Women & Girls HIV/AIDS Awareness Day. The date is tentatively set for March 17, 2015, but we are open to date suggestions for a few more days as well as co-endorsing organizations, especially HIV advocacy groups and agencies focused on social justice, public health, human rights, etc. We need you!

For the second year in a row, the President's budget has proposed to ELIMINATE targeted services for HIV+ women, infants, children, youth, and HIV affected families served by the Ryan White Part D program. The combined efforts of global community advocates stopped them once; we can do it AGAIN! We MUST do it again!

From midnight to midnight, let's cover Twitter with tweets about the importance of retaining these critical family-centered HIV services, using the hashtage #SaveRyanWhitePartD along with any other hashtags relevant to your particular tweet (i.e. #womenshealth, #girlslikeus, etc). You can also help promote this issue by sharing about it on other social media platforms. ANYONE can participate; it is important to have both people living with HIV and allies involved.

We will be creating some sample tweets and statuses that anyone can modify for their use if they aren't certain what to say. We will also provide some suggested targets if you want to direct your tweets to certain Part D and/or budget appropriations decision makers. (You can create and schedule your tweets ahead of time if you won't have availability on that day; we'll post a link explaining how to do so for those who might be unfamiliar.)

Positive women, youth, and their affected families don't disappear once NWGHAAD has come and gone; and these services shouldn't be disappearing either.  Please unite with us to ensure that these important services remain intact. And please share this WIDELY!

(Want more info? Feel free to visit http://SaveRyanWhitePartD.org for more information on these efforts. Additionally, a great, concise list of talking points created by PWN-USA is available at: https://pwnusa.files.wordpress.com/2014/03/part-d-talking-points-full-3-25-2014.pdf)

Thursday, February 12, 2015

Public Comment to PACHA: PWN USA LEADS THE WAY IN THE FIGHT TO PROTECT RYAN WHITE PART D!!!!

(This post is derived in its entirety from a Public Comment made to the President's Advisory Council on HIV/AIDS [PACHA] by Vanessa Johnson, JD on behalf of the Positive Women's Network-USA, available also HERE.)


PWN USA LEADS THE WAY IN THE FIGHT TO PROTECT RYAN WHITE PART D!!!!

Comments on Proposed Consolidation of Ryan White Part D into Ryan White Part C
Provided to the Presidential Advisory Council on HIV/AIDS (PACHA)
February 12, 2015

Good afternoon. My name is Vanessa Johnson, and I stand before you on behalf of Positive Women’s Network – USA, a national membership body of over 3000 women living with HIV, inclusive of transgender women, throughout the U.S. We also have seven formally affiliated regional chapters which operate at the state and local level. I am here to express our grave concern about the proposed consolidation of Ryan White Part D into Part C in the President’s Fiscal Year 2016 proposed budget. We strongly oppose this consolidation. It is important to note that last year Congress rejected this very same proposed consolidation.
Part D of the Ryan White Program provides family-centered primary and specialty medical care and supportive services to underinsured women, infants, children and youth living with HIV. These are women and young people who are likely to be juggling caregiving responsibilities and challenges accessing care. While not all women living with HIV are eligible to receive care through Part D, more than 90,000 women, young people and family members access Part D services each year. These programs often function as crucial entry points into care for underinsured women – and youth, the fastest growing population living with HIV in the U.S.
The consolidation of Ryan White Part D into Part C has the potential to roll back progress toward all goals of the National HIV/AIDS Strategy: to reduce HIV-related health disparities, improve retention in care and health outcomes for people with HIV, and reduce new HIV cases.
ACA implementation is currently underway; the Ryan White Program should remain stable while stakeholders take the time needed to assess how these and other services may most effectively complement the ACA in meeting the care needs of people with HIV, and the goals of the National HIV/AIDS Strategy. Consolidating Ryan White Part D into Part C has the potential to radically destabilize existing comprehensive care models created by Part D programs.
The Ryan White Program is successful at retaining people with HIV in care. It should be maintained intact, not eliminated, as the Affordable Care Act (ACA) changes the landscape of care. Only 41% of women living with HIV nationally are retained in care, according to CDC’s HIV care continuum. However, the Ryan White Program effectively retains 77% of its female clients in care, according to the most recent available report by the Health Resources and Services Administration (HRSA). Ryan White Part D has also helped drastically reduce rates of vertical HIV transmission through proactive outreach and coordinated care for pregnant women living with HIV and their families. Eliminating Part D could negatively impact both outcomes by expanding expand gaps in the HIV care continuum, at a time when we have made real progress. Further, sexual and reproductive health services for women living with HIV of all ages require specialty expertise, and it is not clear how the scope and quality of these services may vary throughout the other parts of the Ryan White program.
Programs delivering services that are essential for many women and their families to engage in care are at risk of being cut under the proposed elimination of Part D. To read a quote from Morenike Giwa Onaiwu, a mother and advocate from Houston, Texas:
The course of my life changed forever when my family became affected by HIV in 2007. .... Ryan White Part D services … have been a lifeline for our family.
We have benefited from Part D services like medical case management, linkage to mental health treatment, transportation assistance, and educational programs … with staff that provides all services in an inclusive, respectful, and culturally competent way. With Ryan White Part D, the services focus on how to help the whole family, recognizing that it’s not just about the person who is living with HIV. It’s truly a family-centered medical home model.
… It’s not just about access to medicine, although that’s so important. It’s also about connecting with other families affected by HIV. For my children, who are growing up in an HIV affected family, it’s about meeting other affected and/or positive youth and supporting each other. It’s about learning to hold your head up high, to refuse to be ashamed of this disease and the stigma it carries, to learn to be an advocate for yourself and your family.
If Part D becomes subsumed under Part C, there is a risk that community-based providers like the one described above, who have developed years of culturally relevant expertise and community-level approaches that are key to reducing health disparities, may not be funded to provide these services. Although some Part D programs are dually funded by Ryan White Part C, there may be some Part D grantees that are not eligible to apply for Part C funding.
Ryan White Part D is a vital source of funding for services focused on women and families. However, it is also necessary that women's unique needs be addressed across all parts of the Ryan White Program, and across the full spectrum of HIV care and services in the U.S.
We request that the PACHA release a statement that all parts of the Ryan White program should remain intact as Affordable Care Act implementation is underway, and specifically opposing the proposed consolidation of Ryan White Part D into Part C. Administrative concerns should not be solved by cutting essential programs for women living with HIV.

Tuesday, February 10, 2015

Ryan White. Real Lives.

(This post is derived in its entirety from a post on the HIV Prevention Justice Alliance website for the #RyanWhiteTreatmentWorks campaign, available HERE.)


Ryan White. Real Lives. Meet Morenike Giwa

 | February 10, 2015
Texas ranks 4th in the nation in deaths among adults with an HIV diagnosis. The State of Texas has not yet expanded Medicaid under the Affordable Care Act. As a result, an estimated 11,200 of the lowest-income HIV+ residents of Texas have been left out of coverage available in other states. They must rely on Ryan White funding for crucial medical care and other supportive services.  In 2011, an estimated 38,978 Texans received services through the Ryan White program.

Morénike GiwaMorenike Giwa
Houston, TX
The course of my life changed forever when my family became affected by HIV in 2007. I was afraid and unsure how to proceed — there was so much to keep track of with doctor’s appointments, medicine regimens, plus the mental stress and stigma of being part of a family dealing with HIV. Ryan White Part D services and the Texas HIV Medication Program (our state AIDS Drug Assistance Program) have been a lifeline for our family.
We have benefited from Part D services like medical case management, linkage to mental health treatment, transportation assistance, and educational programs. Several local Ryan White providers are offered in beautiful facilities with many great programs, and even more importantly, staff that provides all services in an inclusive, respectful, and culturally competent way. With Ryan White Part D, the services focus on how to help the whole family, recognizing that it’s not just about the person who is living with HIV. It’s truly a family-centered medical home model.
The Texas HIV Medication Program (THMP) has been critical in helping us maintain access to life-saving medications when we have experienced gaps in insurance coverage. THMP has allowed our family to stay adherent to the prescribed medications, maintain an undetectable viral load, and avoid treatment interruptions that can lead to developing a drug-resistant strain of HIV.
I shudder to think what would happen to families like mine without the Ryan White Program. It’s not just about access to medicine, although that’s so important. It’s also about connecting with other families affected by HIV. For my children, who are growing up in an HIV affected family, it’s about meeting other affected and/or positive youth and supporting each other. It’s about learning to hold your head up high, to refuse to be ashamed of this disease and the stigma it carries, to learn to be an advocate for yourself and your family.
My children are the heart of our family, and they are growing up free of HIV stigma. They are six amazing young people—four of whom came home to us from three different African countries, and two who were born in the U.S. Without the support of Ryan White Program services, particularly Part D, we would never have been able to grow and thrive as a family as well as we have. I now know that HIV isn’t the end of the story; it’s merely a new beginning. My family has been transformed by Ryan White services—please keep this crucially important program intact.

Take action now!

Co-sponsors: AIDS United, Southern AIDS Strategy Initiative, Southern AIDS Coalition, Center for Health Law and Policy Innovation at Harvard Law School, HIVHealthReform.org, HIV Prevention Justice Alliance, and the AIDS Foundation of Chicago.
This campaign has been made possible by the generous support of the Elton John AIDS Foundation.
EJAF_2_Orange-logo-with-text-with-border

Monday, February 9, 2015

AIDS Alliance: President Obama's FY 2016 Budget Eliminates Funding for Women, Infants, Children and Youth Living with HIV/AIDS

(This post is derived in its entirety from a press release of the AIDS Alliance for Women, Infants, Children, Youth, & Families, also available HERE.)


For Immediate Release: February 9, 2015  
Media Contact: Dr. Ivy Turnbull: (202) 754-1858 ITurnbull@TheAIDSInstitute.org 
President Obama's FY 2016 Budget Eliminates Funding for Women, Infants, Children and Youth Living with HIV/AIDS
  
Washington, DC - For the second time, President Obama has eliminated funding for Ryan White Part D, the program funded solely for the purpose of providing family-centered primary medical care and support services for women, including HIV positive pregnant women, infants, children and youth, from his FY 2016 budget and proposed moving the funding to the Early Intervention Services program, (Part C). The President proposed eliminating funding for this vital program in his FY 2015 budget. However, Congress rejected the proposal and approved $75,297,000 for Part D.

"It is deeply troubling that the President would for the second time eliminate funding for Part D from his FY 2016 budget particularly since there are still so many unanswered questions and concerns regarding the implementation of the proposed Part C/D consolidation," commented Dr. Ivy Turnbull, Deputy Executive Director of the AIDS Alliance for Women, Infants, Children, Youth & Families (AIDS Alliance). "Furthermore, we are at a critical time in the fight against this epidemic and if we believe that we can win this war on HIV/AIDS, then surely we know how essential it is to maintain the Ryan White Program and all of its Parts."

Ryan White Part D is often referred to as the lifeline for women, infants, children and youth living with HIV/AIDS. Since 1988, the Part D programs have been and continue to be the entry point into medical care for women and youth. The family-centered primary medical and supportive services provided by Part D funded programs are uniquely tailored to address the needs of women, including HIV positive pregnant women, HIV exposed infants, children and youth.

"The Ryan White Part D Program has been an invaluable lifeline for my family," commented Morenike Giwa, AIDS Alliance Advisory Board Member from Houston, Texas. "Initially afraid and unsure how to proceed, this vital program has offered so much support for us since diagnosis, helping to achieve and maintain viral suppression and a positive life outlook. It truly changed our lives. As a Part D consumer, I know that the program's family-centered, integrated model of care and support services truly works. It is an important gateway into care for those of us who need it most - women, youth, and families. Consolidating Ryan White Part D into Part C in this manner will hurt families like mine tremendously."

Ryan White Part D programs have been extremely effective in bringing the most vulnerable populations into and retained in care. Removing Part D from the Ryan White program would dismantle systems of care created for our most vulnerable populations. Many of the populations served by Part D will be lost or never enter into care thus increasing the existing gaps in the HIV Care Continuum. Moreover, major program changes that are this controversial should be left to Congress and certainly should wait until we better understand the impact of the Affordable Care Act on the populations served by the Ryan White program.
"Although we applaud the President for keeping his commitment to the domestic HIV/AIDS crisis we are calling on Congress to again reject the President's FY 2016 proposal and approve funding for Ryan White Part D," commented, Michael Ruppal, Executive Director of The AIDS Institute and AIDS Alliance"
###
 AIDS Alliance for Women, Infants, Children, Youth & Families is a national program of

 For more information or to become involved please contact:
Dr. Ivy Turnbull, Deputy Executive Director, AIDS Alliance at:

Friday, February 6, 2015

AIDS United Continues to Oppose the Consolidation of Part C and Part D

(This post is taken from the AIDS United Policy Action Center Blog, also available HERE.)

President Releases FY 2016 Budget Proposal

2015-02-06 | AIDS United
President Obama released his Fiscal Year (FY) 2016 budget proposal this week, calling for overall funding increases, including flat funding and modest increases for HIV programs. The total budget is $4.1 trillion in discretionary and mandatory spending. Funding for discretionary programs, or programs that must be appropriated each year by Congress, was increased by about $74 billion and is divided between $605 billion for defense discretionary funding and $563 billion for non-defense discretionary spending, which covers all federal funding for domestic HIV programs.
President Obama’s FY 2016 budget proposed either flat funding (at FY 2015 levels) or, in a few cases, modest increases for the domestic HIV portfolio. The Department of Health and Human Services (HHS) budget, which covers a majority of domestic HIV/AIDS programs, would receive a total of $83.8 billion. The President’s budget once again called for the consolidation of Ryan White Program Parts C and D, which would receive a $4 million increase as a single program. All other parts of the Ryan White Program are flat funded in the proposal. AIDS United continues to oppose the consolidation of Part C and Part D and will advocate Congress not to include this consolidation in their appropriation.
The Centers for Disease Control and Prevention (CDC) Division of HIV/AIDS Prevention (DHAP) received a $6.4 million increase, and the Division of Adolescent and School Health (DASH) received $6.3 million increase. The CDC’s National Center for HIV, Viral Hepatitis, STD, and TB Prevention received a $44 million increase. Viral Hepatitis received $31.5 million increase doubling the portfolio, the funding will align with the HHS Action Plan for the Prevention, Care, and Treatment of Viral Hepatitis.
The National Institutes of Health (NIH) Office of AIDS Research receives a $90 million increase from FY 2015 in the president’s budget. Abstinence-only programs do not receive funding for either discretionary or mandatory programs in the budget proposal. Title X family planning programs received an increase of $13.5 million. Although the president’s numbers show a decrease for Community Health Centers (CHCs), the CHCs are actually flat funded for FY 2016 because they retain $869 million in reserve funds from FY 2015. The FY 2015 reserve funding was intended to be used for Fiscal Years 2016, 2017, and 2018.
The Housing Opportunities for People with AIDS (HOPWA) program received a $2 million increase and President Obama included his proposal to modernize the HOPWA program by changing the formula to count living HIV, fair market rent and poverty factors.
Secretary Burwell stated that the HHS budget is designed to build on President Obama’s plan to strengthen the middle class. Aside from the HIV-specific portfolio, the budget would save $423 billion over ten years by slowing Medicare spending. It also expands access to affordable quality healthcare, invests $4.2 billion in discretionary and mandatory funding for the Community Health Centers, proposes an increase of $1 billion to the National Institutes of Health, and extends the Children’s Health Insurance Program (CHIP), which needs to be reauthorized by Congress this year. The proposal would also permanently address the so-called “Doc Fix” by structuring the budget under the assumption that Congress will repeal the controversial Medicare Sustainable Growth Rate (SGR) formula.
As in past years, the Obama Administration’s budget requests that communities be allowed to make the decision to use federal funding for syringe exchange in conjunction with local law and health authorities. Unfortunately, the new Congress seems likely to continue the outdated and ineffective ban on the use of federal funds for syringe exchange.

Wednesday, February 4, 2015

NO HIV+ Women & Children Left Behind!!!

The proposed elimination/consolidation of Ryan White Part D is extremely problematic on several levels. Now is not the time to dismantle such an important program that serves such a vulnerable portion of the HIV community. The program saves lives and its loss could be catastrophic to the many women, youth, teens, infants, children, and families that are served. For an illustration of the importance of Ryan White Part D, please read below to read 25 important stories about the impact of Ryan White Part D (also available on our website HERE).







On 04/10/2014 (National Youth HIV & AIDS Awareness Day), we held an all-day peaceful online protest of the proposed elimination of Ryan White Part D healthcare and services for women, infants, children, and youth.  Over 100 “flash” blog posts were featured that day from consumers, supporters, and providers emphasizing the crucial need to #SaveRyanWhitePartD!
By popular demand, we’ve compiled the top 25 of the flash blog posts that readers have stated that they found to be the most impactful and have posted them here (in random order).  However, please note that we are proud of ALL of the posts, and grateful for all of the contributors; they’re ALL “the best” in our eyes. :)
           SRWPD1

1. Barbara, FL: 
The Ryan White program saved me.  I was a middle-aged, highly educated, middle-class, white woman who was a graduate student with limited health insurance and limited income.  If it weren’t for Ryan White, I wouldn’t even have gotten tested.  And the ADAP program gave me my life-saving antiretroviral therapy.  I got into care and have been healthy and 100% adherent to my medications ever since my diagnosis.  I work, I’m productive, I got my PhD.  I have good support, but the Ryan White programs made it possible for me to live a normal life, with every hope that I will live into my old age.
I know that each Part of the Ryan White program has stories like mine, especially the Part D program, which expertly and efficiently provides care to women and youth. 
DON’T CHANGE SOMETHING THAT WORKS SO WELL.  The benefits relative to the cost of Part D are immeasurable!!
2. Dr. Stephen Spector of La Jolla, California:
Ryan White Part D provides the critical social services and case management to our women, children, youth and families infected and affected by HIV. Without the Part D support, the medical care provided by myself and other health professionals would not be as successful in preventing HIV mother-to-child transmission and providing the successful care and treatment of our target populations. It is a fallacy to believe that when adult care providers control the funding that services provided to create a medical home for women, children and youth will continue.
 pinata

3. Theresa from Texas:
Ryan Part D addresses the unique needs of children, adolescents and women with HIV. The RW staff supported by Part D addresses the needs of the identified patient/person with HIV and also the needs of the patient’s families. As you may know, when you have a child born to a mother with HIV, the efforts of physicians, nurse, social workers and case managers must be provided to every unique family and their given situation.
The woman must have access to care and ARVs, the baby must have medication with the first hours of life and then for 6 weeks and is seen till the child is 18 months to ensure that the child is HIV NEG and has a healthy immune system and is developing normally. The RW staff provides essential education, follow-up, social services, support, assistance with transportation and referrals to testing sites for the mother’s partner and to test older sibling, as appropriate and needed. 
RW PART D is the only program that takes into account the entire family and provides family focused services, culturally and language sensitive services and ultimately help mother, children and adolescents with HIV overcome their daily struggles of living with HIV.Please do not cut the funding nor consolidate this program developed for these vulnerable populations across the USA. For many families, their social worker of case manager funded by RW Part D may be one of the few individuals who are aware of their diagnosis, medication and ongoing need for medical care.
4. From Connie, IL:
Three decades into the HIV/AIDS epidemic we have found ourselves as a country at a yet another crossroads about whose needs are to be met and whose aren’t. Although the HIV/AIDS consumer base has changed greatly since the inception of Ryan White part D the need for specialized services have not. 
There have been great medical strides made that have ensured that American babies are no longer born with HIV/AIDS and we celebrate that. However, the needs of families and children affected by HIV/AIDS are still very much so valid and unique. 
As a woman living with AIDS and the daughter of a woman who succumbed to AIDS I am personally invested in doing my part to ensure that the millions of women, children and families infected and affected with HIV/AIDS know that their lives matter and that their needs are important. 
It seems as though those entrusted to make fiscal decisions are shortsighted in seeing the major impact Ryan White Part D funds have in the vitality and quality of life of these special families. Child care, transportation and housing are essential aspects of attaining and maintaining stabilized care for many women and young people living HIV. 
To extract these amenities is not only a disservice to the overall health of our nation but irresponsible in preventing the spread of HIV among high risk populations. It is my hope that our elected decision makers are thoroughly informed about the potential negative effects removing Part D will have on individuals, families, communities and subsequently the country at large. 
Diagnosed: October 2002 
In Loving Memory of Gladys D. Johnson 
Date of Departure: January 26, 1995
2collab

5. A.K. from Texas:
I don’t think this is right because young people have to have their meds. I am HIV positive and if I don’t take my meds I will get sick and then later die. Because I take my meds every day I can grow up graduate from high school, go to college and get married. And when I have kids I dont have to give them HIV.
6. Gayle from NY:
I am an RN working with the HIV population under the Ryan White Part D funding since it’s inception. This funding has afforded us the ability to give quality primary medical care, case management, prescription drug assistance, and supportive services, to this under served population, To cut this Part D budget will take away the ability of these infants, youth and caregivers the services that are so important. We can NOT stand by and allow this horrific cuts to take place. (My salary is not funded by Part D.)
7. Poem: We Have Hope
3balloon
We Have Hope©
We have hope for our children that they will live thrive and grow. 
We have hope that all children will have the right
to have a quality education.
We have hope that this senseless violence will end.
We have hope that that they will no longer
live in the shadows of war.
We have hope that scourge of HIV will no longer destroy families.
We have hope that all children will be able
 to go to a doctor and get well.
We have hope that all children will be able to live, love, laugh;
Smile, grin, run, play, be a star, enjoy, have fun,
be excited about life.
We have hope,
We have hope,
We have hope.
sister mama sonya-013©

8. Shawn Decker, Virginia:
As a kid, I was also kicked out of school for having HIV. Ryan White couldn’t have a better legacy than the CARE Act. It’s crucial that we continue to support people living with HIV while honoring the spirit of Ryan’s incredible work.
 4ferris
9. Dazon Dixon Diallo, Atlanta, GA
This is important because HIV is still a health crisis for poor women and children in the US. They won’t see us if they don’t fund us…Keep the funding for HIV+ women, children and families.  
Women Get HIV Too!

10. 
Angela, NY:
God blessed us all when he gave us Ryan White, although his time here was short he was VERY important. I hope and pray his namesake program continues to help as many HIV + individuals as possible, because I’m sure that’s what he would want, and I KNOW that the program is necessary, important, needed and vital in continuing to help all who are afflicted with this tough fight. Keep the faith, we are strongest in numbers! God bless.
11. Beth, CA:
We are very fortunate that California provides excellent support for adoptive families raising (previously) orphaned children living with HIV. The medical support offered via California Children’s Services helps our daughters thrive daily. This program has assisted many families such as ours, and without it in place, there would be many more children languishing rather than being raised in loving adoptive families such as ours. Thank You Ryan White Part D!
12. N, TX:
I have HIV/AIDS. Because of Ryan White Part D, my family and I were able to go to therapy for free. When you are a teenager sometimes you can go through a lot of stress because kids at school and people you date sometimes act funny with you because of HIV or AIDS. Not only did we get a real therapist who had their license, it was at a place where they knew a lot about HIV and AIDS, so they could really help me. I was really depressed and didn’t want to go to school anymore or even try to have a boyfriend because of all the drama. The therapy I got with Part D helped me learn more about being comfortable with myself and learn how to handle when and how to tell people. I still don’t have a boyfriend, but when I get one again this time I won’t deal with being treated like dirt anymore because the therapy helped me to know I am worth better than that.
 6drawing
13. Brandon from Massachusetts:
As an advocate for LGBT and At-Risk community health initiatives, I know that it is vitally important that the Ryan White part D coverage continues. Whenever we combine services for the “whole” we lose sight of the individual, the outsider and the minority. It becomes eclipsed by the majority and it suffers.
14. M.L., AZ:
This program is important to me because I have used it for some time. Thank God I no longer have to depend on it. But this program helps so many people who live below the poverty Level. PLEASE, Mr Obama! Do what ever it takes to keep this program active.
9snow
15. Susan from North Carolina:
I am a pediatric social worker serving this population at E. Carolina U./Vidant Medical Center. Targeted funding means continued efforts to address HIV at its source–outreach, identification, treatmet, and retention in care. This translates to, among other social benefits, positive women in the US having a less than 1-2% chance of delivering a positive infant.  
Targeted funding is also critical to ongoing counseling/med. management of perinatally-infected children & youth, whose numbers are dwindling, thankfully. The effect of Part D-sanctioned efforts in these advances cannot be underestimated.
16. Chris from Texas: 
If we are a nation that cares about the dignity of the human person, then let’s put money where it will help those in need. In comparison to where we spend and send money, help funding these programs is minuscule in dollar figures, but profoundly meaningful.
17. Amanda, CO:
We are a middle class family with an adopted child living with HIV. When my husband lost his job we lost our insurance and had to depend on our state’s Ryan White funding for a period of time to help us with the ENORMOUS cost associated with HIV treatment.
18. Bernard from Uganda:
We need to give everybody a chance to good health and more so to those that may not have the economic abilities to attain it. Our women and children are the foundation of our societies and communities, if we neglect then, then we would have neglected our own heart and soul. 
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 19. Evelio, Texas: 
A couple of years ago, the government had proposed the merger of two National Institutes of Health (NIH) Institutes, the National Institute on Drug Abuse (NIDA) and the National Institute on Alcohol Abuse and Addiction (NIAAA). At that time the idea of an Addictions Institute seemed to make sense. However, at the end, the merger did not happen. Instead, NIDA, NIAAA, and the National Cancer Institute (which funds research on tobacco addiction) maintained their identity and purpose and were instructed to collaborate and to share resources where ever possible.  
I would like to express my own personal views on the merger of Ryan White Part D:  
First, I am concerned about the current political and social views regarding women’s health and what this merger means to those women affected; 
Given federal budget uncertainties regarding HIV funding, the time, energy, and resources required for a major structural reorganization are not warranted; 
HRSA project officers and staff with an expertise on issues related to Women & Children and HIV/AIDS, specifically, should continue to serve at their current capacity; 
Certain populations are disproportionately affected where women and children are concerned, especially minorities and poor white women and children, making this a health equity issue;  
Since Texas has not expanded Medicare, the above-aforementioned are strongly affected locally; 
Also, if merging Part D makes sense to save administrative costs, then why not merge all Ryan White Parts together? (Obviously not something that is advisable.)

20. Sallie, North Carolina: 
As a pediatric infectious disease physician, I see families struggle with the resources needed to keep up with the medical costs and burden, without this funding, some of these families would start to lose the battle.
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21. K, Oregon:
To be honest, I just learned about the Ryan White Medicaid waiver recently–because folks who make laws are trying to defund it. As soon as I learned that, and what the waiver is, I was horrified. This waiver is not for the direct cost of HIV medication and treatment, it’s for the other stuff.
This is a thing people don’t seem to grok about chronic illness: managing it is a lot of work. I do not have intimate experience of managing HIV, but I manage other chronic illnesses, & I’m going to talk about that because some things do translate across illnesses.
People have this idea that if you have a chronic illness, you take your medication and are pretty much fine. The more nuanced folks will realize that your fine and everyone else’s fine are a bit different, or that “fine” is relative, but people focus on the medications that directly deal with the chronic condition. That isn’t even a small percentage. There is so much more.
Part of living with chronic illness is doctor’s appointments. There’s the appointments for regular maintinance of the condition, even when you feel fine–there may be blood tests, medication adjustments, other procedures. There’s more urgent appointments when symptoms of the chronic illness flare up, and these almost always involve testing or medication changes or referral to yet another doctor in case something in another system is wrong. There’s primary care appointments when you’re sick, because for many of us with chronic illness, getting “a cold” or “the flu” or what have you is has the potential to cause a lot of problems.
One of the services Ryan White Part D covers is transportation for HIV patients. When I go to the neurologist it can be a whole day–hour on the bus, half hour of paperwork, half hour appointment, wait in the lab for half an hour, 15 minutes for the blood draw, hour and a half to the pharmacy, 20 minute wait there, half hour home. See, poor people ride the bus. Chronically ill folks are disproportionately poor, and recipients of this waiver are disproportionately women and children of color (who are also disproportionately living in poverty). A chronically ill woman with kids, or a mother of a chronically ill child? It isn’t right to ask her to spend all day on the bus. Cutting services that allow her to spend time with her children isn’t acceptable.
And sometimes transport is a need. A legitimate need. It is, in fact, possible to be too sick to go to the doctor. That was me last week. If the bus is the only option, getting to the doctors who take medicaid can be a trek. Making that trek while acutely ill on top of chronic illnesses exacerbated by viral or bacterial infections? Usually if I’m afraid I’ll collapse on the bus or not get home, I take my chances. A parent doesn’t have that option. A parent of a chronically ill child has a much more difficult call than I did in that situation–she wants what is best for her baby, her child. But taking a sick kid on the bus is miserable, the actual worst. The people who think cutting this program is a bright idea may say “take a cab” but that isn’t realistic for many many people. That’s not an acceptable solution.
Nor is cutting child care funding. I’ve never taken a child to my doctor appointments, but I have been taken to my mother’s & my siblings’ doctor appointments, and they went to mine. It is boring for the children who aren’t directly being examined, and it is much harder for the adults to discuss the things that the appointment is actually about.
The programs provided by this waiver allow women and children to do more with their time and energy than manage HIV. This is important. Chronic illness is scary. It’s so much harder to deal with when everything is sitting at doctors and riding the bus and playing alone because today’s trips knocked mommy out (peanut butter sandwiches for dinner, because little kids can make those & mom is too tired to make dinner, even if she really wants to). The programs allow families to have a life outside of managing the illness–to have an actual family life. To have those moments of silliness. To have time and energy to enjoy each other.
“Not cutting medication funding” is nowhere near enough. It is a beginning but it’s nothing to be proud of. It’s not even the minimum of decency. Families dealing with HIV & getting services through this waiver deserve the help. They deserve to know more than daily management of the disease. Lending a hand shouldn’t be too much to ask, not even a little.
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22. K.B. from Texas:
I am a teenage HIV patient who needs all the help I can get when paying for my medication.

23. Susan, North Carolina: 
As a social worker who serves pediatric and pregnant HIV positive clients, I am concerned to think that the targeted prevention, treatment, and retention efforts that RW Part D makes possible is in jeopardy. 
Admittedly, we have come a LONG way since the ‘dark days’ of the outbreak; back then, we could scarcely imagine that a pregnant positive woman who is treatment adherent could be almost 100% assured of having a negative infant, with perinatal transmission rates nationally at less than 1-2%.  It would also have been a stretch to imagine the strides in HIV treatment, such that today’s HAART meds give clients their lives and health back, with medication adherence and unobtrusive regimens.  
Because of these advances, the U.S. is seeing fewer positive children, a joy to report (as my colleagues and I love to say, we can only hope that we will be out of a job some day).  These children are ‘ageing out’ of our care and transitioning to Adult ID care.  On the flip side, the U.S. is seeing a precipitous rise in newly diagnosed MSMs and teens.
Yes, there has been amazing progress. However, until HIV is eradicated, I believe that to ease up on our efforts, despite our successes, portends resurgence.
Much of what I do day-to-day can be called ‘relationship-building’—care coordination, outreach, personal communication, resource referral, follow-up; and medication, safer sex, and sexual health counseling.  Such ‘soft’ interventions can be challenging to quantify, if not justify. Yet, evidence-based research is bearing out the critical importance of ‘relationship’ in positive patient outcomes.  
As an example of what Part D funding allows me to do, and how relationship-building comes into play:  I am sanctioned to meet monthly with an interdisciplinary team comprised of  university, medical center, community, and regional providers, for the purpose of reviewing, case by case, pregnant women who have entered our care, as well as women who have delivered. We have found this ‘touching base’ to be indispensable in catching and addressing issues before they become problems.   
Prior to delivery, I meet with the mother-to-be and introduce her to our “Exposed Newborn Protocol,” per federal guidelines; this describes the care her infant will receive for 4 months post-partum, namely, 3 clinic visits that include HIV testing (to establish a definitive diagnosis), an exam and consult by our Drs., and a medical case management visit from me that addresses the mother as well. Part D pays for these services.
In disclosure, RW Part D covers 25% of my salary; RW Part B covers 75%.
Mr. President, thank you for your consideration of conserving this baseline safety net for countless HIV positive women and their infants.  
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24. David from California:
I am young and have always been safe. I didn’t use protection 15% of the time and 85% protected. At age 19 I found out I am HIV+ and I’ve been thru a lot. I learned from my mistake. 
The older guy I spoke to was + and knew he was since 2007. I regret what i did everyday and blame myself. I’m stressed hurt depressed angry tired and beyond that I am strong so this can’t break me unless I let it. I’m still in control of my life. Things will someday get better; don’t judge me if you don’t know me.
25. JM from Tennessee:
This is important to me because without Ryan White services, I literally would have been dead by now. There have been times in my life (in between jobs, insurance snafus through my company-sponsored coverage, etc) where Ryan White has been able to cover/save me. 
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