Monday, December 14, 2009

Aid Program for Lung Transplant Recipients

Some info on a financial aid program set up to help people who are having to receive a lung transplant. The program is through the Boomer Esiason Foundation

From The Boomer Esiason Foundation's Website: Link

BEF Lung Transplant Grant Program

While the cost of transplantation is typically covered by most insurance companies, travel and relocation costs are typically absorbed by the patient’s families. The BEF Lung Transplant Grants Program is designed to help families cover the expenses that are not covered by their insurance.

Possible expenses to the recipient and family include, but are not limited to: Patient and family transportation costs for evaluation, surgery, and clinic visits after transplant; and housing, food, and living expenses associated with relocation to the transplant site.

Candidate Evaluation:
Applicants need to provide a letter from a social worker stating their needs as well as a detailed cost breakdown from the family specifying where the funds would be allocated. All grant requests are reviewed by a committee that includes: Jerry Cahill, Volunteer Director of Education and Team Boomer; Dave Rimington, President; and Boomer Esiason, Chairman. Grant recipients are required to provide a copy of official receipts to the Foundation for all expenses that are covered by the grant. All donations made by BEF are made to the CF clinics directly, which closely monitor the grant recipients’ expenses.

Call 646-292-7937 if you have question about the program or would like to make a donation.
Saturday, December 12, 2009

FDA approval needed for CF drug

I would like to encourage all of you to please copy and send the letter below to the FDA at

The CF community needs to get this drug approved by the FDA. We need your help to be heard loud and clear. Please sign your letter and include your city and state then ask all your family and friends to do the same.

If you are interested you can read the press release from Gilead the drug maker at

Thank you,
Co-Founder of the Living Breath Foundation

I am writing to you today about a product that is attempting to get FDA approval, Aztreonam Lysine for Inhalation. The product is manufactured by Gilead and will serve the purpose of fighting against Pseudomonas Aeruginosa infections in the airways of Cystic Fibrosis patients. It has already been approved in both Europe & Australia under the name Cayston(R) and the US has been lagging behind in its approval. Our Cystic Fibrosis patients with Pseudomonas Aeruginosa are running out of antibiotic options to help fight infections in their lungs. Effectively treating infections in patients with CF is very challenging, and new treatment options are urgently needed. This medicine offers some new hope in their battle to maintain the health of their lungs. About 60% of people with Cystic Fibrosis have a chronic respiratory infection caused by the bacteria called Pseudomonas Aeruginosa that settles into the thick mucus trapped in the airways. Once it sets up house in the respiratory tract, Pseudomonas Aeruginosa is almost impossible to get rid of. Respiratory failure caused by the infection is often the ultimate cause of death in many people suffering from Cystic Fibrosis. The FDA has established a target review date, under the Prescription Drug User Fee Act (PDUFA), of February 13, 2010. I would like to urge you to please grant this medicine the go ahead for approval. The FDA Advisory Committee vote 15-2 in favor of this medicine and 17-2 on the correct dose and regimen.
Friday, December 11, 2009

UPDATE 2-US FDA panel says Gilead drug aids cystic fibrosis

An Interesting Article on Aztreonam:

By Jackie Frank

GAITHERSBURG, Md., Dec 10 (Reuters) - A U.S. Food and Drug Administration advisory panel on Thursday said it found Gilead Sciences Inc's (GILD.O) aztreonam was an effective new treatment for life-threatening lung infections in cystic fibrosis patients.

The drug won marketing approval in September in Europe and Canada under the brand name Cayston.

The anti-infective drugs panel's finding on a vote of 15-2 that the drug is safe and effective serves as a recommendation that the FDA approve the drug. While the agency is not required to follow an advisory panel's recommendation, the panel's opinion carries great weight.

The panel said the safety and efficacy involved a 75 milligram dose administered three times a day to aid in improvement of respiratory symptoms and lung function.

Azteronam is designed to treat lung infections in these patients caused by common pseudomonas aeruginosa bacteria, for which there are few inhaled antibiotics available.

Dr. Bruce Marshall of the Cystic Fibrosis Foundation urged FDA to approve the drug swiftly and told the panel: "There is a desperate need for additional inhaled antibiotics."

Drug resistance is a complication in treatment for these patients.

Monday, December 7, 2009

Scientists restore some function to cells from cystic fibrosis patients

In an encouraging new development, a team led by Scripps Research Institute scientists has restored partial function to lung cells collected from patients with cystic fibrosis. While there is still much work to be done before the therapy can be tested in humans, the discovery opens the door to a new class of therapies for this and a host of other chronic diseases.

Scientists restore some function to cells from cystic fibrosis patients