No HIV+ Women & Children Left Behind: Best of the NYHAAD Flash Blog
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. 
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.
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
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
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.
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.
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.
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.
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.
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.
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.
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.
