Michael Emanuel Rajner

Twitter Activists Plead With FL Gov Rick Scott About HIV Drugs

Filed By Michael Emanuel Rajner | January 22, 2011 6:00 PM | comments

Filed in: Politics
Tags: ADAP, Florida, Florida Department of Health, Florida GLBT Democratic Caucus, governor, HIV/AIDS, NMAC, Paul Kawata, Rick Scott, Twitter

Last Thursday evening, Florida Governor Rick Scott hosted a town hall on Twitter rickscott.png
providing Floridians with an opportunity to share a short message with Scott using 140 characters or less. At first I struggled with the daunting task limiting a message for help in less than 140 characters, which include the addressee and the identifying hash marks as a prefix and yet, still find a way to state the problem and what help is needed.

I've been called many things in my life, but a tweeter is certainly not one of them. Realizing others lack the basic skills in how to tweet, with the assistance of Phillip Perry, Communications Director for the Florida GLBT Democratic Caucus, in minutes we developed a quick tweeting for dummies guide, which I relied on for my own tweets, to help others communicate their message.

Continue on to read about Florida's ADAP crisis.

How was I to explain that in February 2011, the state's safety net program designed to ensure access to lifesaving HIV-medications for Floridians is going bankrupt and poses a serious threat to the health and well-being of the nearly 10,000 Floridians remaining on the program?

Last year this time, the program was estimated to up to 18,000 people who access Florida's ADAP. Since that time the state began a waiting list with nearly 3,000 people waiting for access, removed HIV-related drugs for co-occurring conditions that impact adherence to HIV-treatment from its formulary, and, now, is proposing to further restrict the access by tightening eligibility requirements. At times, vulnerable Floridians were left on the curb and became a victim of a system growing with increasing difficulty to navigate.

Officials will assert no one is going without medication, but that is not absolutely true. Since last June, I regularly receive calls of help from people who have become lost in a failing system. And when you consider the high rate of co-occurring conditions of heart disease, diabetes, depression and other mental health issues, the state needs to step up and ensure no Floridian is left behind.

At one county health department, some of these same vulnerable people report phones go unanswered, or their calls are met with a message of "voicemail is full". One young man reported he completely stopped treatment and was left with no faith in the establishment with legal oversight to prevent HIV/AIDS from become a greater public health hazard. The mission of Florida's ADAP is:

Florida ADAP.jpgTo Provide Lifesaving Medications, Disease Management Training & Information To Our Clients In A Cost Effective Way

Lowering an individual's HIV viral load has been proven to slow HIV transmission rate. Access to HIV medications is not only an issue of care and treatment, but it's also a more important issue of sound evidence-based prevention efforts.

State officials continue to frame Florida's crisis with its ADAP as "the perfect storm" and points to a sluggish economy, high unemployment, and lost access to health insurance. What you will often not hear is the state's failure to participate in a lucrative revenue generating program for medication rebates which could have generated several millions in desperately needed money for Florida's program.

Statewide, advocates are puzzled that the state has a deficit of nearly $15 million and must consider closing the door to needy Floridians for the months of February and March. Despite reported efforts to have lowered the program deficit from $25 million, at this time advocates and the Floridians whose lives depend on this program are left with little hope.

When you consider for the past several months federal officials have been investigating Florida's administration of its ADAP and launched a full scale forensic audit to identify inefficiencies and waste you can understand why the federal government is not about to waste scarce resources on an inefficiently run state program.

Last week state officials announced a band-aid solution, with 99% probability, for the months of February and March where nearly 6,500 people will be "deselected" and access their HIV-medications from Wellvista, a nonprofit committed to improving health and wellness for the uninsured and underinsured by providing access to prescription medications and pediatric dental services.

In April of 2011, these same 6,500 people will then be "seamlessly" transitioned back to the state's ADAP. Now if you find any of this confusing and upsetting, you are not alone! State officials continue to ignore the impact on larger communities with greater need and a more complex and weakening infrastructure incapable of meeting the current workloads.

After developing the quick guide on how-to tweet, it was distributed barely one hour in advance of the town hall to several listserves for the HIV/AIDS community. Several advocates took time to tweet and attempt to explain what I just did. Below are a few of the messages sent to Governor Rick Scott:

RJamesTampa Robert James:
@FLGovScott The AIDS Drug Asst Prg -ADAP crisis in FL & are you taking steps-help people keep their life saving meds? Tnks . #sayfie

BOLTPOZ BOLT Fort Lauderdale:
@FLGovScott Access to meds slows HIV-trans. FL leads US with +3k people on waitlist 4 AIDS-meds. Is ADAP dropping 6,500 ppl in Feb? #sayfie

MichaelRajner Michael E Rajner:
@FLGovScott Where is the plan exist to disenroll 6,500 ADAP patients worried they will lose access to lifesaving medications? #sayfie

pkawata Paul Kawata:
@FLGovScott FL ADAP has $15m deficit and Floridians living w HIV are worried they will lose access to lifesaving medications

MichaelRajner Michael E Rajner:
@FLGovScott Access to meds slows HIV-infection. FL leads US w +3k people on waitlist 4 AIDS-meds. Is ADAP dropping 6,500 ppl in Feb? #sayfie

MichaelRajner Michael E Rajner:
@FLGovScott HIV-meds slows HIV-inf rates. FL leads US w +3k people on waitlist 4 AIDSmeds. Is ADAP dropping 6,500 ppl in Feb? #sayfie #flgov

kjc2106 katrina:
@FLGovScott FL ADAP has $15m deficit and Floridians living w HIV are worried they will lose access to lifesaving medications #sayfie

kjc2106 katrina:
@FLGovScott Does the plan exist to disenroll 6,500 ADAP patients worried they will lose access to lifesaving medications? #sayfie

trmeyers Renee Meyers:
@FLGovScott Access to meds slows HIV-trans. FL leads US with +3k people on waitlist 4 meds. Is ADAP dropping 6,500 ppl in Feb? #sayfie

Noelinsf Noel M:
@FLGovScott FL ADAP has $15m deficit and Floridians living w HIV are worried they will lose access to lifesaving medications.#sayfie

MichaelRajner Michael E Rajner:
@FLGovScott we need your help to stop FL from cutting off 6,500 HIV-patients from losing access to lifesaving medications? #sayfie #flgov

FLGovRickScott Not Rick Scott:
We'll only do it for AIDS patients, ok? RT @MichaelRajner: need your help to stop FL from cutting off 6,500 HIV-patients... #flgov

The most profound tweet came from Cathy Robinson, Twitter handle "straighttalkpod". She wrote:

@FLGovScott the ADAP crisis needs more than a temporary fix...any ideas on how to fix it? Or are we heading back to 20 funerals a wk? #flgov

I'm afraid that my fear is becoming reality with the AIDS community finding itself on the declining side of a bell-curve when it comes to funding and other support for critical HIV/AIDS support programs.

With more than 1 million people in the United States living with HIV/AIDS, how is it so few are making the effort to stand firm and champion the needs of so many? Are you a person living with HIV/AIDS? Are you among the "have's" of our society? Or you making a difference in this fight?

Please, find your voice and step up to help. We need everyone to win this battle!


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the_czarina the_czarina | January 23, 2011 2:56 AM

I have no faith whatsoever in this individual to do the right thing by anybody at any time on any issue of compassion or the common good, but thank you, Michael and everyone, for the effort.

No faith in Scott doesn't mean I'll ever stop fighting.

This is like 1981. Do we really have to go thru this again?

Forget the FL governor or any other state ADAP program.

The real question is why was ETHA dropped from Obama's health care bill.

Why can't Obama authorize more emergency ADAP funding (he only did $25 million last year, but gave billions more to the rich) or roll an emergency package into the omnibus budget bill that Congress has to pass in a couple of months (since they never passed a budget last year).

If we're going to be serious about fixing this ADAP problem throughout the country, we've got to hold the federal folks accountable.

The Obama campaign needs Florida's electoral votes. Get their attention in the only way they'll understand.

Let's hope It works! Something has to give soon!

Great examples for how to tweet the message.

Thanks. I needed it to send my own tweets. It would be great to see a few blogs on how and when to use Twitter and other social marketing as part of an effective social marketing strategy.

gerry scoppettuolo | January 26, 2011 10:49 PM

we have to mobilize there's always money for war
www.actuptoday.blogspot.com

muneca

is rick scott an aids patient? he looks sooo unhealthy and the eyes all bugged out
I am concerned about this creature he looks like a crack head
We need to help the little governer