Most patients with cystic fibrosis are just wrapping up an annual hassle of the new year – that of confirming their insurance will still cover the medications they need. It’s a process known as insurance reauthorization.
Pandemic Rocked Cystic Fibrosis Patients’ Economic Stability
ICER Report Adds Insult to Injury for Cystic Fibrosis Patients
Help protect patients like me from crippling co-pays | Opinion
Breakthrough Cystic Fibrosis Treatment on the Horizon
Elated. Nervous. Hopeful. That’s how thousands of cystic fibrosis patients felt upon hearing last week’s news: the Food and Drug Administration will soon review a new triple combination therapy that could drastically improve their quality of life.
My Co-Pay Accumulator Story
Thousands of Arkansas Medicaid Patients Lose Coverage Over Work Requirements
In Arkansas, 4,300 fewer people have health insurance through the state’s Medicaid program this week. Another 5,000 could face a similar fate next month. Why? They failed to meet the state’s Medicaid work requirements.
Final ICER Report Leaves Cystic Fibrosis Community Uneasy
Economists at the Institute for Clinical and Economic Review advise a whopping 77 percent price discount on new CFTR modulators for cystic fibrosis, according to a final evidence report.
Preserve hope and access to life-saving treatments
Hope is a powerful elixir.
My family was dealt an unexpected blow nearly 26 years ago when our son Gunnar was diagnosed with cystic fibrosis, a debilitating genetic disease for which there is no cure. At the time, the diagnosis was akin to a death sentence because there were no approved treatments and most patients died before they turned 30.
*** PRESS RELEASE *** CYSTIC FIBROSIS RESEARCH INC. STATEMENT ON ICER’S CYSTIC FIBROSIS EVIDENCE REPORT
Cystic Fibrosis Research Inc. released a statement on ICER's cystic fibrosis evidence report.
ICER Report Dampens Prospects for Cystic Fibrosis Treatment
Should Medicaid Patients be Required to Work?
Cystic Fibrosis Community Celebrates New Treatment Option
I Am Rare
Jerry Cahill, a CF Ambassador at the Boomer Esiason Foundation, recently released a video on CF, his rare disease:
The Price and Value of Orphan Drugs
How do you put a price tag on a drug that offers life-altering results – but for a small group of patients? The question is becoming increasingly relevant with the rise of innovative, targeted medicine. And it’s at the heart of current debate about how the Institute for Clinical and Economic Review’s value framework applies to orphan drugs.
CFRI: Many Voices ~ One Voice CF Advocacy & Awareness
CFRI's Many Voices ~ One Voice Cystic Fibrosis Advocacy and Awareness Campaign raises the general public's awareness and understanding of the challenges of cystic fibrosis - the most common fatal genetic disease in the United States. This film highlights individuals with CF as they balance daily medical regimens and living life fully.
Boomer Esiason: In search of a breakthrough for my son's cystic fibrosis
Former Bengals quarterback Boomer Esiason is co-chairman of the Boomer Esiason Foundation.
Just over 24 years ago, my son Gunnar was diagnosed with cystic fibrosis, a debilitating and unrelenting disease for which there is no cure. At the time of his diagnosis, CF was akin to a death sentence – there were no FDA-approved treatments and we could only hope that we might see a cure in time to save Gunnar’s life.
Learn more at Cincinnati.com
***PRESS RELEASE*** New Cystic Fibrosis White Paper Defines Barriers to Treatment
White paper addresses why patients cannot access breakthrough treatments that treat the cause, not just the symptoms, of cystic fibrosis
WASHINGTON – Today the Cystic Fibrosis Engagement Network, a project of the Alliance for Patient Access, released a new white paper, “Making Treatment Accessible for Cystic Fibrosis Patients.” The white paper details what’s standing in the way of patient access to new treatments approved to target some of the genetic mutations that cause Cystic Fibrosis – and how addressing bureaucratic barriers could help the 30,000 Americans living with this rare disease. For the patients with specific mutations, these treatments can significantly improve lung function and quality of life.
The white paper pinpoints two key barriers to treatment:
1. Medicaid barriers. Due to the expense of managing the disease, many patients with cystic fibrosis – about 45 percent – depend upon Medicaid. Criteria and processes for determining prescription drug coverage can vary by state, where Drug Utilization Reviews and Pharmacy and Therapeutics committees often decide which patients get access to certain drugs. Officials do not necessarily communicate with actual patients or confer with experts, leading to decisions that can be “outdated and inconsistent with current practices.”
2. Prior authorization requirements. This technique requires patients and their families to appeal to the health plan for permission to access the medication their physician prescribed. Insurers may require paperwork, tests, or proof that a patient has failed on a less expensive therapy before they approve the requested drug.
The delay can be painful, even damaging for patients with the progressive disease.
These barriers can block vital access to advanced and long-awaited treatments. For decades, patients were able only to treat the symptoms of the disease using mucus-thinning drugs and vests that vibrate the chest cavity to help clear mucus buildup from the lungs and vital organs.
The paper urges policymakers, advocates, patients and health care providers to work toward commonsense solutions that improve access to cystic fibrosis medications.
Resources
Cystic Fibrosis Engagement Network https://www.engagecf.org
Alliance for Patient Access http://allianceforpatientaccess.org
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Trials Data Raises Hopes in Cystic Fibrosis Community
Promising clinical trials data has excited patients with cystic fibrosis and their families. But will access barriers dash their hopes for more and better treatment options?
Read more at Institute for Patient Access.