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The AIDS Institute has reached out concerning an amicus brief that is being prepared on the Halbig case (the issue before the court in this case is whether premium tax credits within federal marketplace states were lawful or not). They want to include in the amicus some stories to demonstrate the severe impact on people with HIV/AIDS if the court decided that the premium tax credits were unlawful.

Specifically, the AIDS Institute is looking to identify an individual, or several, who:
1. is/are living with HIV or AIDS,
2. have purchased health insurance through the Florida Marketplace,
3. qualify for subsides on ACA plan purchases, by Premium Tax Credits and/or Cost Sharing Reductions,
4. are willing to publically shared her/his experiences by inclusion in an amicus brief

Patients or their advocates should feel free to contact The AIDS Institute’s state policy analyst – Jesse Fry – at (850) 339-6395 or via email: jfry@theaidsinstitute.org (I’m copying Jesse on this e-mail). Of course, they can always contact me directly with any questions or concerns.

The time frame on this is short, so they ideally need to connect patients to lawyers by Oct. 9. Thanks for any help you can provide on this!
Best regards,
Vicki A. Tucci, Esq.
Lead Navigator
Healthcare Access Partnership Initiative (HAPI)
Legal Aid Society of Palm Beach County, Inc.
423 Fern Street, Suite 200
West Palm Beach, FL 33401
Telephone: (561) 655-8944, ext. 252
Cellular Phone; (561) 859-9128
Facsimile: (561) 655-5269
website: legalaidpbc.org
vtucci@legalaidpbc.org

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September 22, 2011:

Washington, DC – Most domestic HIV/AIDS programs were flat funded, including HIV prevention at the CDC and the Ryan White HIV/AIDS Program. The AIDS Drug Assistance Program (ADAP) did receive an increase of $15 million for a total of $900 million.

 ” “This is extremely disappointing since we have the drugs to keep people alive, the knowledge that treatment is prevention, along with a number of other tools that help prevent HIV, and the leadership by the Obama Administration as detailed in the National HIV/AIDS Strategy. Without the necessary resources, the goals of the Strategy will not be achieved, and thousands of more people in the United States will needlessly become infected with HIV.”

 There are currently over 8,800 people in ten states on ADAP waiting lists and over 445 people in six states who have been disenrolled from the program due to budget constraints and the growing number of people enrolling in ADAP. The $15 million increase proposed by the Subcommittee can reduce the waiting list by only about 1,300, or just 15 percent.

The AIDS Institute and its partners have been advocating for an increase of at least $106 million. The President has requested a $55 million increase.

The Committee is proposing to flat fund HIV prevention programs at the CDC despite

-an estimated 50,000 new HIV infections each year and

-over 230,000 people unaware of their infection.

The U.S. government invests only about 3 percent of its HIV funding in prevention, which is woefully inadequate, considering that the lifetime cost of caring and treating one person with HIV is approximately $360,000.    

The Senate Appropriations Committee also voted to cut funding to the Housing Opportunities for People with AIDS program by $4.3 million and global AIDS programs.

Read full article: click here

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New York (CNN) — Forty-two years after a police raid sparked rioting and perhaps the birth of the American gay rights movement, New Yorkers rejoiced at their city’s annual pride parade Sunday in celebration of same-sex couples’ newly-acquired right to wed.

The parade, or march, meandered along Manhattan’s Fifth Avenue and passed in front of the famous Stonewall Inn in Greenwich Village, where the rioting took place in 1969.

Gov. Andrew Cuomo signed a bill into law on Friday that made New York the sixth state to legalize same-sex marriage, more than doubling the number of Americans living in states that permit such unions.

The measure will take effect 30 days after it was signed, on July 24, providing same-sex couples with a slew of new rights that include employer health benefits, easier inheritance and a host of state tax breaks.

Federal recognition, however, was not a part of Friday’s vote, leaving benefits like Social Security and ease of immigration largely out of reach for same-sex couples.

Marching with supporters on Sunday, Cuomo told reporters that the country looks to New York as a guide for many of its progressive politics.

“The point of civil rights laws is to protect everybody — both the people who look like us or who we relate to and the people who don’t,” said Suzanne Goldberg, a professor at New York’s Columbia Law School. “The point of a parade that celebrates gay pride is to make room for all people who identify themselves as gay, lesbian, bisexual and transgender.”

The controversial bill passed a Republican-controlled Senate before reaching Cuomo’s desk, in an extended legislative session that left many skeptical over whether lawmakers would bring the measure to a vote.

Its passage also sparked sharp criticism from opposition lawmakers, who warned of potential lawsuits against religious institutions — a question that delayed deliberations and ultimately resulted in an amendment to the bill to protect religious groups from litigation

Religious leaders also cautioned against the wider implications of redefining the legal parameters of marriage.

“We worry that both marriage and the family will be undermined by this tragic presumption of government in passing this legislation that attempts to redefine these cornerstones of civilization,” the state’s Catholic bishops said in a joint statement released late Friday. It was signed by Archbishop Timothy M. Dolan and seven other bishops.

Asked what his message was for the gay community, Dolan said Sunday morning, “I tell the gay community I love you very much, and every single morning when I say my prayers, I pray for (the) health and happiness of everyone in New York.

“I’m very sorry that our opponents succeeded in reducing this to anti-gay sentiment,” he said. “It’s not. It’s pro-marriage, it’s not anti-gay.”

But, he said, there was “sadness and disappointment” when the bill passed.

“We as Catholics would oppose any attempt by anybody to redefine marriage,” Dolan said. “We don’t believe marriage can be changed or radically altered to accommodate any lifestyle. If anything I’ve said would lead you to believe I have nothing but love and respect, then I apologize.”

The bill passed by a narrow 33-29 vote — a first for a GOP-led state Senate.

Meanwhile, those in attendance for Sunday’s parade were largely one-sided in their perspective.

“I think it’s better because there should be equality,” said Katie Worral, 17, who was visiting New York from Liverpool, England. “At the end of the day, we’re all human beings.”

“I think it’s awesome,” said Robin Rosser, 49, who traveled to New York from Union, New Jersey, for the parade. “This is number six and there will be many more to come.”

“It’s a total breakthrough,” said Kathryn Flowers, 22, of Queens, New York, who stood beside her partner as they cheered on marchers. “There’s so many people who have been together for years. It’s about time they get married.”

Asked whether she and her partner will marry, Flowers said, “Anything’s possible now.”

Others traveled from abroad to attend Sunday’s events.

“This is hugely important,” said Jorge Perez, 44, who traveled from Costa Rica specifically to watch the city’s annual parade. “It’s good to see a big state like New York finally get this sort of thing into law.”

Whether or not Friday’s vote reflects new momentum and the national model that Cuomo projects, it seemed that many still had a lot to cheer about during the city’s annual parade.

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A federal judge has ruled that a key provision of the Obama administration’s health care law is unconstitutional.

The 42-page opinion by U.S. District Court Judge Henry Hudson shores up the argument by conservatives. The judge, a 2002 appointee of George W. Bush, ruled that the law’s “individual mandate” requiring everyone to have health insurance goes beyond the powers of Congress to regulate interstate commerce.

Two Democratic judges have dismissed cases against the New health care plan, but there are at least a dozen suits headed to federal courts. Let’s keep an eye on this.

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Today is the time to vote and make your voice heard. This is the day when we are all equals. Every vote counts the same whether you are a billionaire or bankrupt. It’s important to take part in this process.

If you don’t know who to vote for, check out the Voter Guide from Florida Equality.

In late news, Charlie Christ has stated that he will caucus with Democrats if he wins.

So go vote.

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Early Voting started yesterday, Monday 10-18-2010 and will continue for two weeks until Saturday 10-30-2010, 11:00 AM – 7:00 PM. Check for the locations in your county-area. There are two locations in the Wilton Manors-Ft Lauderdale area;

Wilton Manors City Hall
2020 Wilton Drive
Wilton Manor, FL 33305

Main Library
100 S. Andrews Ave
Ft Lauderdale FL 33301

Here is a voting guide supplied by Florida Equality. If you agree with this, print it out and take it with you.

Vote early and often
J/K
-Steve

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There are Three parts to this Post, Part I is about activism and who and how to contact your representative both in Washington and Tallahassie. Part II is about Recertification and the importance of making your appointments. Part III addresses ADAP/Ryan White and the dough-nut hole for people with Medicare Part D.
*****************************************************
I. AIDS Drug Assistance Program (ADAP) Activism 101

If you rely on ADAP for medications, the time to act is now! Even if you are not directly impacted or do not qualify for assistance yourself, please support those in the Community who desparately need your help right now!

There are nearly 2,000 people currently on Florida ADAP and the number continues to grow. The Federal Government has only allocated $25 million to help the ADAP crisis. The need is a conservative estimate of an additional $101 million to get us through March 31, 2011.

I am providing you with contacts for both State and Federal Officials and I strongly encourage you to write or call ALL of them. It’s really not that hard.

Example:

Dr. Senator Nelson,

I am writing to urge you to support Emergency Funding for the AIDS Drug Assistance Program. I appreciate the $25 million that has been allocated, but at least $101 million additional dollars are needed to solve the horrible ADAP CRISIS and Florida is the hardest hit state! People are really struggling in Florida and we must be able to access basic care and treatment, with medications being the most critical part. Please support this additional funding as soon as possible. Patients are really suffering from being on the Wait List or not being able to obtain essential supportive medications that have been removed from the Formulary. These supportive medications are vital to adherence as many cannot tolerate the side effects of HIV medications without them.

Thank you for your attention and I appreciate the support I am counting on you to provide. Patients’ live are at risk!

Sincerely,
(Your Name)
(Your Address)
(Your Phone Number)

That is just an example. You can do this by email or phone. If you are directly impacted, please personalize it and let them see how hard it is on you.

If you do not have computer acess, contact The Capital Switchboard at (202) 224-3121. Ask to speak to someone in the office of our Florida Senators. Be persistent and keep trying if you cannot get through. Once you get through to one of them, call back and ask for the other one. Then call back and ask for your Congressman. You will need to provide your full zip code +4. For example, my zip is 33069-5319. It should be on any bill you receive such as your electric bill.

Call Florida’s Governor at (850) 488-7146 and ask for him to allocate money to solve the ADAP CRISIS.

Call the Secretary of Health and Human Services, Kathleen Sebelius, at (202) 690-7000 and ask to speak to someone about Florida’s ADAP CRISIS.

Call the White House Office of National AIDS Policy at (202) 456-4533 and ask to speak to someone about Florida’s ADAP CRISIS.

By email:

Visit www.senate.gov, select Florida and it will give you a web form to fill out for both of our Senators.

Visit www.house.gov, enter your zip code +4 and fill out the web form for your Congressman or Congresswoman.

Send a letter to the White House Office of National AIDS Policy at AIDSPolicy@who.eop.gov.

Visit www.whitehouse.gov, click on contact us, and email President Obama.

Send a letter to Health and Human Services Secretary to Kathleen.Sebelius@hhs.gov.

Send a letter to Florida’s Governor Charlie.Crist@myflorida.com.

Visit www.myflorida.com and click on Government in the left hand column. Then click under Florida Government Information on “Florida State Legislators.” Enter your zip code +4 and it will direct you to your Florida State Representative and Senator. Please write them a letter urging them to fight on the State level to provide more funding to end this ADAP Crisis.

I know this is a lot, but you can “copy and paste” a lot to avoid typing the same letter over and over.

It is time for us to ACT UP and FIGHT BACK! Our friends, many of whom have passed on, marched and protested to set up these important safety net programs. Please help keep the country from going backwards!

Thank you and I truly hope you will help, regardless of whether you are directly impacted or not. There is STRENGTH IN NUMBERS.
Tim

Please watch for a post regarding an evening meeting in November sponsored by SFAN (South Florida AIDS Network). It is important that those affected come to this evening meeting to hear what is happening, make your voice heard and get help. All of the key players in Broward County will be there to answer questions and hopefully provide assistance.
*****************************************************
II. Recertification
Do not miss your recertification appointment! You will be removed from the system and put on the Wait List. Remember that ADAP recertification is currently every 6 months. If you are told that your Ryan White certification is expired and you need Centralized Intake and Eligibility, the number is(954) 566-1417. They do emergency appointments as needed and are placing employees in other locations such as Care Resource and Broward House. The Director of this new program is Natasha. It should get more convenient soon.

Here is a resource of who to call at Broward County Health Department.

For ADAP regular appointments, call the ADAP appointment line (954) 713-3196 or (954) 467-4700 extension 5630
For Emergency appointments, contact the ADAP Coordinator Brenda Duru at (954) 467-4700 extension 5625.
For assistance with Patient Assistance Program applications, please call the Navigator William Patrick at (954) 467-4700 extension 5666.
He is at the Main Pharmacy location. An additional Navigator has been hired for the Pompano Pharmacy, but do not have her number yet.
There are no plans to put a Navigator at the Hollywood Pharmacy location.

If you have problems with any of the interviewing clerks, please contact Brenda Duru at the extension above. Her alternate is Gail Tyler extension 5927.

If you have difficulty with the Patient Assistance Program Navigator, he reports to the Part B Administrator Fran Alvis extension 5658.

If none of these employees can help you, contact the HIV/AIDS Program Director Paul Moore at extension 5590. Please only contact Paul as a last resort after trying the others above.

Remember that their is a “Grievance” process and there should be flyers on how to file a grievance at all pharmacy locations.
*****************************************************
III. Medicare Part D &ADAP:
Don’t Panic!
Fight Back, Stay Informed and Prepare

This posting is for those patients who have Medicare Part D, but need ADAP assistance due to high costs. There are HUGE, NEGATIVE changes that will happen if Activism does not obtain the needed funding.

2011 was finally supposed to be a good year because AIDS Drug Assistance Program Payments will count in the doughnut hole, allowing patients to reach catastrophic and save the State precious ADAP funds. In some states, this will be good news. In Florida, it will help some, but other “cost containment strategies” by the Florida Bureau of HIV/AIDS due to the ADAP CRISIS will make it harder on Medicare/ADAP patients.

In 2010, the ADAP Program Policy Manual stated “Clients accessing Part D do not need to spend down pharmaceutical benefits prior to enrolling in ADAP, however applicants/clients must apply for the low income subsidy (Extra help).” This allowed those who were ADAP eligible who did not qualify for Extra Help to obtain medications on the ADAP formulary and use their Medicare Part D drug plan for other medications.

In 2011, DRASTIC changes are in the “cost containment strategies” and may be very difficult for these patients if Activism on both the State and Federal levels for more funding is unsuccessful. The ADAP Program Policy Manual now states “Medicare Part D clients seeking ADAP services must reach the “doughnut hole” PRIOR to enrolling in ADAP. Medicare Part D clients needing drug assistance should work with their case manager or ADAP Staff to access alternative assistance such as Patient Assistance Programs (PAP) or “other local resources.”

The enrollment period for 2011 is November 15, 2010 – December 31, 2010. If no changes are made, it is VERY IMPORTANT that you review plans more carefully and make sure you can afford the extra costs. It makes matters far worse that the ADAP Formulary ONLY covers Antiretrovirals and Opportunistic Infection medications.

Medicare Part D has 3 phases. “Initial Phase”, “Coverage Gap called the doughnut hole” and “Catastrophic.”

During the Initial Phase up to $2,840 in total drug costs, Medicare patient will have to pay premium, any deductible and co-payments until you hit the “Coverage Gap.”

During the “Coverage Gap”, ADAP will assist you with ADAP formulary drugs only. You will have full coverage only for your antiretrovirals and the small list of Opportunistic Infection drugs. For drugs not on the ADAP formulary including those important supportive drugs that have been removed, patient will have to pay. For brand name drugs, Pharmaceutical Companies are offering a 50% discount in 2011 so patient would pay the other 50%.

The only positive is that now ADAP payments do count towards you True Out of Pocket Costs (TROOP) until total paid by both patient, ADAP and Brand Name Discount equals $4,550.

For the first time, patients will actually reach the “catastrophic” phase. Once that happens, ADAP Formulary drugs only will be covered. All other drugs will be the patient’s responsibility of $2.50 generic, $6.30 brand, or 5%, whichever is GREATER.

Hopefully this explains why the need for ACTIVSM is especially great. Please make phone calls and write letters as instructed in the AIDS Drug Assistance Program Activism 101 post to try and prevent this from happening. This can all change if we receive additional State and Federal Funding.

I am so sorry to scare you, but that is the reality of what is currently happening. Medicare Part D clients will not be allowed to access drugs on the Ryan White Part A Formulary. This is subject to change, but seems unlikely in such a difficult economic environment. Again, fight back!

You are welcome to attend Local Pharmacy Advisory Committee Meetings. You will only be allowed to speak for about 3 minutes under “Public Comment”, but it would be helpful for the Committee to hear directly from patients about how difficult it will be to afford their medications and to question why Ryan White Part A Formulary cannot help Medicare Part D patients. The next meeting is Monday November 8, 2010 at 10:00 a.m. in the Galleria Professional Bldg, Suite 115 (Beside of Borders bookstore). I attend them as a guest and can provide you with moral support. The meetings are technical and you are welcome to either stay or just go home after making “Public Comment.”

Please attend the November SFAN (South Florida AIDS Network) evening meeting as well. This event should be very helpful. Date is yet to be determined..I will send to Steve as soon as available.

These two venues are the best options to have your voice heard by local decision makers.

Thank you and I wish you all the best of luck. I am not directly impacted, but I care deeply about the HIV+ Gay Community and our ability to access care and treatment.
Tim (SFAN member and unafilliated PLWHA)

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Vote! It’s the way to make your voice heard.

Tuesday, November 2, 2010 is Election Day. A lot of the funding and support for HIV programs are dependent on who wins these elections.

If we want to be treated as equal citizens in this country, we have to vote for the people that support those goals.

Florida Equality has a Voter Guide for you to use in case you don’t know which candidates to vote for.

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