Welcome to your monthly newsletter on the Florida HIV/AIDS Advocacy Network (FHAAN). We encourage you to read further and learn more about The AIDS Institute's FHAAN program, services and resources.
|Help formulate FHAAN's statement on the Affordable Care Act's impact in Ryan White Reauthorization
Dear FHAAN Members:
Do you want to help formulate FHAAN's statement on the Affordable Care Act's impact in Ryan White Reauthorization?
If you are interested, please email FHAAN@theaidsinstitute.org and a FHAAN leader will contact you about how you can help with this important project.
HRSA is accepting community comments until July 31st, 2012.
Jesse Fry and Joey Wynn, Co-Chairs
Florida HIV/AIDS Advocacy Network (FHAAN)
|Advocacy Committee Report -
AIDS Drug Assistance Program (ADAP)
|ADAP Waiting List (as of June 7, 2012):
* Florida: 360 Individuals (17% of national total)
* US: 2,170 individuals in nine (9) states
We hope to eliminate the Florida wait list if we get anticipated funds this year. ADAP Wait list will be fluctuating until we can take everyone off the list.
ADAP Program Contract Out to Bid
There is currently some discussion about using a vendor outside the Bureau of HIV/AIDS to handle the ADAP program. This bid process is still being worked on and being routed internally for approval. It is anticipated that April-June will be the procurement period and July-Sept for awarding the contract, with an October 1st start date.
FHAAN Concern: Ensuring that the new vendor understands client issues and improves client access.
FHAAN Action: FHAAN leadership is developing an objective public policy survey to be conducted widely asking what our community and patients want to see out of the program. Also discussions are under way with the Division of Management Services to determine if information will be coming out soon and a mechanism for FHAAN members to provide input, and also looking to the Bureau for a public comment period for our community to give input.
We will keep you posted as more information becomes available.
Funding Cuts Put Florida AIDS Patients at Risk
"The vast majority are grateful they have a program that will keep them alive and healthy. Most of them worry about dying. They want to know that somebody cares about them."
Link to the article:
Friday, June 8, 2012 at 7:04 p.m.
US Senator Coburn talks about Florida ADAP on MSNBC
Sen. Tom Coburn talked about the AIDS Drug Assistance Program on MSNBC's Morning Joe! He said money is sitting idle rather than serving patients.
HIV/AIDS services for those impacted by the disease, the HIV/AIDS Administration did spend about $450,000 to produce and videotape World AIDS Day events and $59,300 to cater a World AIDS Day cocktail party and reception attended by 200 people, which comes to nearly $296 per person for the single event.
Nearly 500 patients living with HIV/AIDS in Florida are currently on waiting lists for lifesaving AIDS medication while year after the year the state fails to spend a half-a-million dollars or more provided by the AIDS Drug Assistance Program (ADAP).
The Florida ADAP waiting list was instituted June 1, 2010112 and a total of 439 patients were on list as of April 20, 2012.113 In addition to the waiting list for medicine, the ADAP formulary was also reduced in August 2010 to limit the drugs patients could receive. During this time, "potentially millions of federal dollars" intended for HIV/AIDS services in Florida were unused. There were "pools of money left unspent" including about $500,000 last year and $1.8 million over the past five years.
Local officials claim "none of those unspent federal funds are being returned to Washington but are instead carried over into the next year's local budget."115 But AIDS activists blame complex reviews for tying up the funds that are very much needed to aid those in need.
These failures were not due to financial shortages. To the contrary, each was a failure to manage the available resources properly.
Click here to read full report.
For more information, please contact committee co-chairs:
Advocacy Committee Report -
Medicaid Managed Care
|FHAAN Member Education Program
FHAAN has implemented a Member Education Program on Medicaid Reform.
As part of this program, FHAAN leadership has invited AHCA Medicaid Managed Care Bureau Chief, Melanie Brown-Woofter, to Present to FHAAN during our July 2nd full membership statewide webinar/call
to help educate Medicaid patients about how to choose the managed care plan that's best for them.
Medicaid patients and their doctors in 31 rural counties will soon get their first taste of real managed care -- the kind that requires permission to spend. The state has chosen the company that will make the decisions.
By Christine Jordan Sexton, 06/07/12 © Health News Florida
Next week the Agency for Health Care Administration will wrap up its meetings with the final three of the state's 67 counties, which will also a face a deadline to pay the state for the first round of monthly bills.
Statewide Medicaid Managed Care Updated Information Now Available Online
The Current: Morning Edition for Monday (6/4/12)
TAI Comments to CMS - FL 1115 Demonstration Amendment Attached is a copy of the comments we submitted to the 1115 Demonstration portal on the CMS website and sent to Allison Orris, Acting Director in the Division of State Demonstrations & Waivers at CMS. The comments are in response to an amendment the state of Florida is seeking that could have negative impacts for FL Medicaid beneficiaries living with HIV.
Lindsey Dawson, The AIDS Institute - 6/4/2012
Misrepresentation and Secrecy:
The Keys to Medicaid Privatization
Recently, Florida CHAIN exposed the secret submittal of a request to federal officials by the Agency for Healthcare Administration (AHCA) insisting that Medically Needy patients spend up to 90% of their monthly income in order to retain access to Medicaid coverage. Particularly disconcerting was the fact that AHCA submitted its proposal one day before new federal transparency rules went into effect.
Florida CHAIN's latest blog further explores this matter as well as the Legislature's demand that federal officials allow almost all of Florida Medicaid to be turned over to HMOs (and other managed care plans forced to act like HMOs). AHCA claims the five-county Medicaid Reform experiment has been a success, and so expanding it statewide is not only justifiable, it's needed. Florida CHAIN, however, has spent the last several years bringing the problems within the Reform experiment to light. Most recently, Florida CHAIN and the Florida Center for Fiscal and Economic Policy sent a detailed letter to federal officials reiterating objections and spelling out in detail the State's continued false claims and misrepresentations intended to hide the threat that statewide Medicaid managed care expansion poses to Florida's most vulnerable. Stay tuned!
CHAIN Reaction - June 6, 2012
Additional information has been posted regarding the SMMC program.
From time to time during program development and implementation, the Agency will post additional frequently asked questions (FAQs). Updated FAQs have been posted relating to the SMMC Long-term Care program. The FAQs are located at the Statewide Medicaid Managed Care website on the home page.
From time to time during program development and implementation, the Agency will post guidance statements to provide the public with clarification regarding program components.The statements are located at the Statewide Medicaid Managed Care website. Click on the Guidance Statements tab to view the documents.
May 25 and 30, 2012
Florida Agency for Health Care Administration
Medicaid Watch - June 2012 Edition
State Medicaid and Health Cuts & Expansions
Florida---The legislature (R) got a waiver to move patients (a court order had let them opt out) into managed care; but at first it did so in only 5 counties. But it's now expanding the managed care waiver statewide (starting in 9/12 & to be completed by late 2014; it includes the aged & disabled, as well as families & children. HHS approved the plan- but only if 85% (not just 65%, as the state allowed) of premiums go to care & quality upgrades and plans must meet the needs of 98.5% of enrollees & keep cost sharing below regular Medicaid ceilings. (Email JWynn@BrowardHouse.org for a summary of the the state's managed care proposal.) The legis-lature & Gov Scott (both R) planned to cut MD fees and slash Medicaid costs $1.8 billion. The state cut the aged & disabled level from 88% to SSI's $698 mo rate, except for those in HCB care or in Medicare's 2 year disabled waiting period. The parent level is 20%/ 58% wkg ('12) & CHIP's is 300%. The state covers dentures (but little other adult dentistry), hearing aids & some autism care. Blue Cross & the Dade Co. Health Dept sponsor cheap & lean "Miami-Dade Blue" policies with no brand Rx benefit. Ex-Gov Crist (I) dropped hospice care and cut dialysis, mental health & substance abuse funds & MD fees. There are 19,000 are on HCB & home care waiting lists & advocates sued to force more home & HCB spending. Yet a GOP-run legislative panel refused a $37 million extra US grant to fund more HCB slots. Crist made insurers sell Medigap policies nearly as fairly to the disabled as to the aged. Miami's Jackson Mem Hosp has rising deficits, closed 2 O/P clinics & 2 transplant units & ended dialysis for 175 indigents (many are illegals) ADAP cut its formulary, although its long waiting list fell to 597. The HIV health insurance premium payment program is again open to new clients. Neither it nor ADAP have asset tests & their income levels are 400%. Scott chose a panel to plan to change, cut or end taxes by the 20 hospital districts that help pay the state Medicaid matching share and uncompensated care; and also seeks $66 million in hospital rate cuts. He and the legislature passed a law to shift the bulk of $325 million of as-yet-unpaid Medicaid costs to the coun-ties---which they bitterly oppose. A US District Ct ordered the state Medicaid program to cover autism care, but the state may appeal.
May 31, 2012
CANN (Community Access National Network)
For more information, please contact committee co-chairs:
Advocacy Committee Report -
Department of Health
Meet the New Surgeon General
Dr. John Armstrong, who began work as state surgeon general last week, has been a Floridian since his fellowship at Jackson Memorial; he will commute home to Ocala on weekends.
05/28/12 © Ocala Star-Banner
Expert at DOH Abruptly Resigns
The latest person to leave the Department of Health is Julia Gill, the state's epidemiology director. She was also charged with helping Florida shutter its only publicly run tuberculosis hospital.
By Christine Jordan Sexton, 06/01/12 © Health News Florida
For more information, please contact committee co-chairs:
|Structure Committee Report|
FHAAN Operating Documents
As a service of FHAAN, The AIDS Institute has created tools to enhance network communications:
|Recruitment Committee Report|
2012 Goal: 1,500
This committee meets every other month, on odd numbered months
(Jan, Mar, May, Jul, Sep, Nov).
For more information, please contact committee co-chairs:
Cathy Robinson-Pickett, email@example.com
Ken Bargar, firstname.lastname@example.org
|Click on this button to take this Month's FHAAN Poll:|
Who should you contact to help formulate FHAAN's statement on the Affordable Care Act's impact in Ryan White Reauthorization?
Results from Last Month's Poll:
How much did the Florida Legislature and Governor include in this year's budget for ADAP?
1. They Reduced Funding by $2.5 Million: 0%
2. There was no Funding this Year: 17%
3. Increased Funding by $2.5 Million: 83% (this is the correct answer)
|ActivateU Training Video at 15th Positive Living Conference|
Ft. Walton Beach, Florida
March 9-11, 2012
Butch McKay, Jesse Fry and Rick Vitale present ActivateU training at the 2012 Positive Living Conference. Filmed and presented here by The AIDS Institute and its Florida HIV/AIDS Advocacy Network (FHAAN) program.
Florida Patient Care Planning Group (PCPG) Meeting
March 20-21, 2012
Florida Prevention Planning Group (PPG) Meeting
April 3-4, 2012
|Monthly Surveillance Data to date for Florida|
Update on Truvada PrEP Regulatory Timeline
I wanted to let you know that the U.S. Food and Drug Administration (FDA) has advised Gilead that it has extended the target date for its priority review of Truvada for reducing the risk of HIV acquisition (also known as PrEP) by three months. This means that the agency will now make a decision on whether to approve Truvada for PrEP by September 14, 2012. The FDA has indicated that this extension relates to the agency's standard administrative procedures for reviewing Gilead's proposed Risk Evaluation and Mitigation Strategy (REMS) for Truvada as PrEP. As was discussed at the FDA Advisory Committee Meeting last month, there are many components of a REMS, including a Medication Guide, educational training and an implementation system, all of which may require additional time for adequate FDA review. Gilead will continue to work closely and collaboratively with the FDA during this process, and I will keep you advised of any additional updates along the way. Should you have any questions, please do not hesitate to contact me. I would just ask that you also copy Cara Miller to ensure a timely response during my current travels. Again, many thanks for your ongoing support. I look forward to updating you again soon.
Gregg Alton, Executive Vice President, Corporate and Medical Affairs
June 7, 2012AIDS Chief Joins Medicaid HMO
Tom Liberti, who has been fighting the spread of AIDS since before the disease had a name, is taking his decades of expertise and contacts into the private sector.
By Carol Gentry, 06/13/12 © Health News Florida
Former Florida HIV/AIDS Chief Joins Simply Healthcare
June 11, 2012 - Clear Health Alliance
State Advocates Sign on Letter
Federally Facilitated Exchange (FFE) Guidance
HHS recently released General Guidance on Federally-facilitated Exchanges, which contains information on how FFEs and Partnership Exchanges will be structured and operate. HHS is accepting comments on the guidance until this upcoming Monday, June 18.
To assist state partners that are interested in weighing in on this guidance, several national and state advocacy groups have developed this State Sign-On Letter to HHS - we'll be collecting sign ons until COB this Friday, June 15. The letter highlights several key points in support of consumer interests in the design and operation of FFEs in states.
If your organization is interested in signing on to the letter, please do so by visiting the following site http://tinyurl.com/brlrrwt.
Dave Chandra, Senior Policy Analyst - Center on Budget and Policy Priorities (6/12/2012)
Experts See Health-Care Cost Control as Main Effect of Affordable Care Act
Health care industry experts meeting in Orlando this week are saying that the need to control health-care costs, not the individual mandate issue, will likely be the most far-reaching and debated part of the federal Affordable Care Act, Health News Florida reports. ... Related Research: Flyer and agenda from the second annual Florida Healthcare Symposium.
By Carol Gentry, 05/30/12 © Health News FloridaHospitals Hope Health Law Will be Upheld
By Carol Gentry, 06/10/12 © Health News Florida
By Carol Gentry, 06/11/12 © Health News Florida
Official "deepsouth" Documentary
deepsouth is a feature-length documentary about HIV in the American South. It's been two long years, but we're gearing up for a summer release in the South!
A poetic and grounding exploration into the lives of those affected by HIV in the American South. After 30 years, the global epidemic has overshadowed the fight at home, where HIV has never looked like this before.
Facing a broken health system and a culture of denial, Southerners must create their own solutions to survive.
Please share the link and like us on Facebook: http://www.facebook.com/deepsouthfilm
Here is our website: http://deepsouthfilm.com
Forwarded to FHAAN from Sherry Riley
-May 29, 2012Executive Director Wanted
AIDS Help is seeking applications from individuals who have the capabilities to take overall responsibility for all operations of the agency and its subsidiary operations. Applicants must have a Master's Degree in administration, social work or related field and a minimum of five years professional experience in a senior management position with a government agency, social service agency or private corporation. Related job experience may be substituted for the Master's degree with a minimum of a Bachelor's Degree from an accredited university or college. If you possess the required skills and feel able to lead this agency please download the application from aidshelp.cc/employment.html and submit with a resume either electronically to email@example.com or by mail to The President of the Board, AIDS Help, PO Box 4374, Key West, FL 33041-4374, postmarked no later than June 14. AIDS Help is an Equal Opportunity Employer and drug free workplace offering excellent employee benefits.
FHAAN Member Spotlight
Chair, HIV Care Council of Palm Beach
Rafael is a long-time member of and has been an active participant with the Florida HIV/AIDS Advocacy Network (FHAAN).
Rafael is currently the Chair at HIV Care Council of Palm Beach focusing on Consumer Services. Rafael is also a Peer Mentor/Trainer at Department of Health Palm Beach County and a member of the Consumer Advisory Group, CAG at Florida Department of Health, Bureau of HIV/AIDS.
Previously, Rafael has also done work as an HIV/AIDS Consultant, and worked at the Ryan White HIV Health & Human Services Planning Council of New York.
Rafael Studied Communications at the Universidad del Sagrado Corazón.
Co-Chair, FHAAN Recruitment Committee
In 1991, Cathy Robinson was building a life-as mother, wife and teacher. She had a year-old daughter, and a son on the way. She had just celebrated her 3rd wedding anniversary. In all, a life of normalcy and contentment, but a life that would soon become a battle because of a routine life insurance exam. In 1991, Cathy learned that she was HIV positive.
Her infection was eventually traced back to a rape that occurred in 1984, when she was college student clerking at a convenience store. Although her attacker was caught and jailed, state laws at the time prevented his victims from being told of his HIV positive status. By the time Cathy had identified the source of her infection and located 14 other survivors of this rapist, two of the women had died of AIDS. This injustice led Cathy to begin a crusade to change the state's laws and protect victims' rights. With her background in political science and sociology, Cathy marshaled her skills and knowledge to influence state and national HIV/AIDS policy-making and became an advocate for the voiceless victims and patients. Today she is often called upon to testify before U.S. congressional committees and serve as a local or state representative for HIV/AIDS issues. In 2001, her influence extended internationally when she served as a United Nations NGO delegate at the United Nations Special Session on AIDS.
In 1992, Cathy expanded her crusade to include HIV education and prevention work. She began traveling around the state of Florida, speaking to classes, school assemblies, conferences and gatherings. This small start quickly grew to a national effort to educate youth to prevent the spread of this deadly virus. Schools and universities in Georgia, South Carolina, North Carolina, Wisconsin, and Texas have invited Cathy to share her story and message of prevention. In addition, Cathy has been a keynote speaker or presenter for numerous local, state and national conferences including National Pediatric Nursing Association, National Surgical and Gastrointestinal Association (Minnesota, Florida, Tennessee), US Conference on AIDS, State of Florida Respiratory Association, American Lung Association, and the State Association of School Nurses.
In 2000, Cathy widened her crusade with the founding of Friends-Together, a non-profit organization geared toward educating and meeting the needs of families infected and affected by HIV. Friends-Together works closely with local and state social service agencies to assist families who have an HIV-infected member. It hosts weekend camps to educate HIV-infected families about legal, social, and psychological issues related to the disease. Furthermore, the camps provide an opportunity for HIV-infected families to socialize with others who understand the challenges they face.. Friends-Together also raises funds to provide HIV positive families with school supplies and holiday gifts.
Although Cathy fights her own daily battle with AIDS, she has been a tireless in her work to prevent the spread of HIV. Many organizations have recognized her for achievements and selfless service. Some of her more recent honors include the Everyday Hero Award, Humanitarian of the Year (National Pediatric Nursing Association), Governor's Weekly Point of Light, International Angel of AIDS (People magazine), Ten Outstanding Young American award (US Jaycees), President's Daily Point of Light, Young Floridian of the Year (Florida Jaycees), Partners in Education award (Collier Education Foundation) and Knight of the Archangel of Michael award (International Police Chiefs).
Today, Cathy has built a life, although not the one she imagined in 1991. She lost her job and home when her status became known. Her marriage failed as well. Cathy remarried in 2003 to Steve Pickett, who helped her co-found Friends-Together. He was killed in a car accident in 2005. But her children, Lyndsy and Garrett, who are HIV free, have rallied around their mother's cause. They, along with her many supporters, have helped her build a new life-as advocate, educator and crusader.
As Cathy's life has taken many twists and turns, the adventure continues. She is now re-married to her best friend Troy and her children have headed off to college. She's on a new road of educating people using social networking tools and multimedia to get her message as far and wide as she can.
Industry Partner Spotlight
Originally from Florida, Allison attended Florida State University majoring in Social Work and Sociology planning a career in Mental Health Social work. Later, Allison did graduate work at Duquesne University concentrating on Social and Public Policy.
Allison began working in HIV in 1989 first as a volunteer and then as a case manager at the Pittsburgh AIDS Task Force in Pittsburgh, PA, from there Allison went on to found Alternative Case Management while working part time as the HOPWA coordinator for Southwest Pennsylvania.
Allison later served as the Executive Director for the Beaver County AIDS Service Organization in Aliquippa, PA. In 1999, Allison came to Merck as an HIV Sales Specialist, later transitioning to an HIV Science Liaison position. When Merck began the Community Liaison program in 2009, Allison jumped at the chance to work closer with case managers and other non-prescribers in the community as well as the opportunity to return to Florida.
As Merck's CL for the state of Florida, Allison is available to provide trainings for staff and volunteers working in the HIV field on HIV related topics and Merck products. Allison can also work with you to create educational materials and programming for your clients. At Merck, their fundamental responsibility is discovering, developing and delivering innovative medicines and vaccines that may help make a difference in people's lives. For more than 20 years, Merck has been on the forefront of the response to the HIV and AIDS pandemic.
Allison is married to Oscar Rattenborg, have 2 daughters, Melissa and Lisbet and 2 yellow Labs, Rinji and Lance. Allison and her family currently live in Ft. Myers.
What is the Florida HIV/AIDS Advocacy Network?
|The AIDS Institute's Florida HIV/AIDS Advocacy Network (FHAAN), is the statewide effort composed of people living with HIV/AIDS (PLWHA's), community advocates, HIV/AIDS staff and industry professionals, as well as anyone wanting to be involved with coordinating advocacy efforts for all Floridians living with HIV and AIDS.|
FHAAN's mission is to advocate for statewide HIV/AIDS resources including education, policies, programs, funding and legislation.
For more information, please visit our webpage at: www.FHAAN.org.
|Please let us know what you think of our newsletter.|
|Please feel free to forward this newsletter to your contacts.
Michael Ruppal, Executive Director
The AIDS Institute