Tuesday, April 22, 2014

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

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

At 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

Thursday, April 10, 2014

Erase Part D, erase the gains we have made through the years #saveryanwhitepartd

Ryan White Part D funds provide services and support that are not available under other components of the Care Act, including Part C. Eliminating the Part D program will erase much of the gains made over the last many years, and will disproportionately affect communities of color, where disparities already exist.

-Linda from North Carolina
#SaveRyanWhitePartD #NYHAAD

HIV, Hemophilia, and youth #saveryanwhitepartd

This is a cause that need's to stay in place I have a Son that is Hemopheliac like Ryan was and he could very easily get HIV from Blood and Blood Products..

Brenda from Texas
#SaveRyanWhitePartD #NYHAAD

HIV's changing demographic #saveryanwhitepartd

HIV disproportionately affects women, children, and families, especially those of color and working-class families.

Michael from Pennysylvania

A volunteers fears loss of Part D will lead to higher HIV rates #saveryanwhitepartd

I volunteer at one of the AIDS Service Organizations and I personally see the how HIV disproportionately impacts minority populations that are underrepresented and underserved. Eliminating Part D will rob these vulnerable populations of vital resources, leading to numerous new HIV infections and potential subsequent deaths.

R.S. from New Jersey

Full funding makes sense! #SaveRyanWhitePartD #NYHAAD

Assuring that everyone gets essential healthcare makes economic sense.  It's good for the country, good for business, and saves money in the long run. 
Please support efforts to fully fund Ryan White.

-Jeff from Florida

Throw Away All Stigma #SaveRyanWhitePartD #NYHAAD

Giant step backward while bearing Ryan White's name? :( #SaveRyanWhitePartD #NYHAAD

I lived in Noblesville Indiana during the time young Ryan was fighting his tragic fight. Our town was the place where he was welcomed with open hearts. To think that this nation should take such a giant step backward is truly a shame.
FYI My Mother is buried very close to that brave,strong and beautiful child, Ryan White.
-Julie from North Carolina

Part D's targeted funding has improved HIV health outcomes for women, children, and youth #SaveRyanWhitePartD #NYHAAD

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 positve 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.

-Susan from North Carolina

Children of the World: A Poem by 3sisters in the Spirit Theatre Ministry (TW for graphic content) #SaveRyanWhitePartD #NYHAAD


Tell the tales of the children of the world
Share the life stories of boys and girls
The street children of Freetown Sierra Leone
from the civil war
Just barely surviving from day to day
The children of Haiti who are not able to go to school
In some cases malnutrition is not the exception but the rule
The children of Liberia who carried AK47s
Boy soldiers who killed with ferocity again and again
The children of the Brazillian Favelas where drugs and gangs are a way of life
A sad existence so full of strife
The lost boys of Sudan who were displaced and separated from there families
Victimized by the Sudanese war’s atrocities
The girls who are victimized every minute by human trafficking and sexual exploitation
Tricked into a life of slavery and prostitution
Children who go into foster care
Wanting their own  families, some feeling hopeless, some  living a life of despair
The 14 year old girl in South Africa who has to take care of her sisters and brothers
Because that thing called AIDS took her father and mother
The criminal justice system which unjustly incarcerates
And the lives of our children which it desecrates
Children in Afghanistan, Egypt,Syria, Uganda, Turkey, Iraq
Places of unrest
Places where our children are stressed and depressed
The gangs and drug lords who devastate the lives of our children
While disrespecting, harming  and destroying them
Children in Americas the most technologically advanced country anywhere
Where children die because they have no access to
quality health care
We honor and remember our  children of the world
Wounded and  hurting boys and girls
Children who just need to be supported,
nurtured and cared for
Cherished, protected, treasured and adored
Children who just need to live and JUST be
not be destroyed by
 hatred, foster care, war, trafficking drugs, gangs, poverty, the criminal justice system, OR HIV
sister mama sonya-013©

Eunice expresses her outrage about Part D changes #SaveRyanWhitePartD #NYHAAD

This message is addressed to the politicians and lawmakers who want to shamefully slash Ryan White funding. It would be criminal to slash healthcare funding for HIV+ women, children and families and the American people will not accept such a crime. This disease has been a tragedy from the start and now it is a pharmaceutical profit industry as it continues to ruin so many lives. 

The government is absolutely responsible for the health of the people as so many politicians are invested in the pharmaceutical industry and are profiting by it. The least they politicians can do is to keep the Ryan White benefits and they should be doing a lot more. All that money that they are making should be used to speed up the research for the cure and in the meantime the prevention of and the care of those afflicted. 

What goes around comes around unless you wake up and use your brains and do the right thing, morally, ethically and economically. It is simple common sense!

-Eunice from Massachusetts

Communicable care nurse values Part D #SaveRyanWhitePartD #NYHAAD

While working as a communicable disease nurse, we were fortunate to get Ryan White Funds. It allowed us to work more effectively and get the materials we needed. Please do not leave families without this needed care.

-M.T. from Hawaii

Part D is meaningful #SaveRyanWhitePartD #NYHAAD

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.

-Chris from Texas

HIV Service Provider knows Part D is important #SaveRyanWhitePartD #NYHAAD

I work in the field with individuals who are affected and infected and who fit the profile of this Ryan White Care Act, Part D.  I see the importance of this funding and do not want this to pose a negative impact on the lives of any of the individuals I work with.

-Norman from Texas#SaveRyanWhitePartD #NYHAAD

Don't get rid of Part D! #SaveRyanWhitePartD #NYHAAD

If the Ryan White Part D program can and is able/willing to help families live with HIV then why would we get rid of it? That's just crazy especially when there are many many people living with HIV for years and years with no symptoms and just need a place that they can get the help/support they need? Please do not cut this program out just because of a few dollars it may or may not save.

-Selena from Pennsylvania. #SaveRyanWhitePartD #NYHAAD

Pediatrician worries about decreased services to HIV+ children #SaveRyanWhitePartD #NYHAAD

I provide care to HIV + infants and children. Our service will be dramatically impacted by this change.

-Patrick, North Carolina

Part D: real help for real families #SaveRyanWhitePartD #NYHAAD

How can it NOT be important? We needing funding for the well-being of everyone, including people who are HIV. Take the stigma out of it; these are real people with real families and children to care for!

-Gena from California

HIV Counselor endorses Part D #SaveRyanWhitePartD #NYHAAD

As a Florida certified HIV Counselor, I know first hand how important this program is to helping people, especially families.

-H.B. from Florida