What can you do about Rx America?

[Guest guest]

I took the liberty of already passing on her story to a contact of mine in DC....minus any identifying information. I took her name/e-mail out since I didn't have permission. There absolutely IS something you can do. I serve on National Council on Disability. In short, what we do is study the national trends of issues/best practices and create reports with suggestions for the President. Many state and local organizations use our best practices reports as well. (You can see www.ncd.gov for more info on NCD.) Anyway, the point is, we travel every quarter to different cities, states and hold public meetings and public comment sessions, then work on projects during the quarter. The public gets to view what we are working on as well as offer their ideas, suggestions, struggles, etc. There is a call-in number for those who cannot go to the city. I can give you the information. I've posted it here before I think and so far not many people really take advantage of the opportunity. Besides serving on the council, many of the 15 of us plus staff are scattered throughout states of the union and several in DC trying to make a difference where we are. Your stories drive what we do individually and as a council. PLEASE COMMENT! Here are the details....

On behalf of the National Council on Disability (NCD), I would like to invite you to participate in NCD’s next quarterly meeting. The meeting will take place at the New Orleans Marriott at the Convention Center, 859 Convention Center Boulevard, New Orleans, Louisiana, beginning Monday, January 28, 2008, from 11:00 a.m. until 5:30 p.m.; Tuesday, January 29 from 8:30 a.m. until 5:00 p.m.; and Wednesday, January 30 from 8:30 a.m. until 4:45 p.m. This meeting is open to the public. There will be time designated for public comment, supported by a toll-free call-in line, and your input is appreciated. You can also provide us with your written comments by e-mail, fax, or mail.

Public comment sessions will be held Monday, January 28 from 5:00 p.m. until 5:30 p.m. CST and on Tuesday, January 29 from 4:30 p.m. until 5:00 p.m. CST. The toll-free call-in number is 888-810-3951, and the pass code is “NCD Council Meeting.” There will also be a reception at the hotel for all meeting participants, audience members, and people with disabilities from the community on Tuesday, January 29 from 5:00 p.m. to 6:30 p.m.

NCD is an independent federal agency and is composed of 15 members appointed by the President, by and with the advice and consent of the Senate. We provide advice to the President, Congress, and executive branch agencies to promote policies, programs, practices, and procedures that: (A) guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and ( empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

To carry out our purposes, we believe it is vital that NCD hears from disability communities around the country on what works and what does not for people with disabilities. Our agenda will include sessions on emergency preparedness, youth transition, healthcare, employment and other subjects of interest to the disability community. We are delighted to have the opportunity to visit New Orleans and learn firsthand about the experiences of people with disabilities from the region. Please save the date and do not miss this opportunity to meet NCD board members and staff and offer your comments during the public comment sessions.

For more information about this meeting, please contact NCD’s Director of Communications, Mark S. Quigley, at mquigley@... or by telephone at 202-272-2004 (V), 202-272-2074 (TTY), and please visit our Web site at www.ncd.gov.

Mattheiss, Executive DirectorLifeLine, Inc.Reaching Families of Those with Special Needs With Support, Education, and Respite-- Carol in IL <ps1272000@...> wrote:

Aside from all the other suggestions for different drug programs, what can we do to draw attention to the root problem of the RX America plan? Is this a federal program? State? Can we start bombarding any govt people with e-mail regarding this??This is just unbelievable.... who on earth could AFFORD to pay those prices???? And it's such a life saving drug in this case... are they REALLY suggesting Lynn just watches her dd slowly die !?!?

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

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Downs Heart List Posting - Rx America denies patient Tracleer.

Dear Group,Emergency situation created because Rx America's Advantage Stare Plan has refused to pay for patients Tracleer refill. In 2007 our daughter was in the Medicare plan by AARP. Medicare moved her coverage to this Rx America plan, because AARP was going to charge us each month for their insurance. We checked with Walgreen's who fills all of her prescriptions except for Tracleer. They couldn't tell us what medicines would be covered under this new Rx America plan. We were told to get their formulary off the Internet. We did and Tracleer was in their formulary. We also called Accredo Health Group who had been dispensing the Tracleer. They told us that Rx America had been approving this medicine for other patients. So we went along with the government's Medicare suggestion to switch.When it came time to refill the Tracleer prescription the trouble began. Rx America turned down Accreedo's request for coverage.They wanted information from our daughter's doctors proving that this drug was necessary.The doctor's office had to fill out four different forms at four different times. Each time the doctor's office faxed in the form they requested they wanted another. We even made a trip to the doctor's office to be sure they were complying with Rx America's requests. Rx America received all of these forms. Last night Accredo's insurance representative told us that the forms had been in Rx America's hands for the past 35 hours. Today Rx America told us that they were going to refuse to pay for our daughters Tracleer. We called Accredo and told them that we would find the money some were to pay for the medicine. The cost by the way is $4,139.00 for a 30 day supply. They suggested that we wait a few days to see if Rx America would review the case and maybe change their minds. Our daughter has been on half of her usually dose of this wonderful drug since Monday. Tomorrow will be the last of the medicine. We are desperate to find a solution to this problem.We tried to contact Medicare, but we were but on hold. They said it would be 20 minutes before we could speak to a representative. After waiting 35 minutes we were cut off. We called back but could never get to speak to a live person.This drug is necessary for her life. Since she started taking this medication her quality of life has improved tremendously. She very seldom falls down any more. Her breathing has improved so that her whole body does not bounce when she breathes. There have been many other improvement in her health since she started taking this medication. We are desperate to find a solution this this problem. We should never have changed insurance companies and made a mistake when we placed our daughter health in the hands of some government bureaucrat.Lynne Dimm

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