Monday, January 30, 2012

Protecting the Healthcare Benefits of Individuals with Cystic Fibrosis (CF) and Other Life Threatening Diseases: Patient Protection and Affordable Care Act (by: Debra Turner)


Imagine that you are breathing through a straw with every breath you take. For every day of your life, you have a persistent cough and wheezing. You develop repeated lung and sinus infections requiring strong antibiotics and experimental drugs. With every meal and snack you eat, you take a handful of pills to make your body absorb the fats and nutrients from the food you eat. Two, sometimes three times a day for 30-45 minutes, you strap on a vest that shakes and vibrates you, along with a mask that delivers medicine in the form of a vapor as a breathing treatment. These are a few of the symptoms and a normal course of therapy, medication and treatment options in the daily life of individuals who suffer with Cystic Fibrosis.

Cystic fibrosis is a rare and fatal genetic disease affecting about 30,000 people in the United States and 70,000 people worldwide. The inherited disease causes the body to produce thick mucus that clogs the lungs and leads to constant respiratory infections and premature death. CF also obstructs the pancreas and interferes with the absorption of food and normal growth. The predicted median age of survival is the mid-30s.

Before April 20, 2010, I had only heard of cystic fibrosis, but that day, my grandson was diagnosed with CF at the age of 3 weeks. Fortunately for Skyler, he has always had insurance coverage. The company has never denied him coverage, although many times it is required that the physicians and family bear the responsibility of proof to the insurance company that the treatment is deemed necessary in order for them to pay. Most of his medicine and supplies are covered for now. When he turns 3 years old, his coverage will change. The Cystic Fibrosis Foundation (CFF) will no longer provide his pancreatic enzyme replacement medicine for free.  The insurance company will have to pick up the tab for it. His ‘vest’ machine (Airway Clearance Vest) alone is valued at $20,000.  One of the antibiotics prescribed for 6 months (Tobramycin), costs $1700 each month. The respiratory syncytial virus (RSV) shot he was prescribed once a month for 5 months was $700 each shot. Health care for a CF patient costs $64,000 per year on average, 15 times more than that of the average person.

What happens to those who are not so fortunate to have health insurance? What about the young adult who is no longer covered through their parents benefits? Or the 35 year old who is losing their job due to frequent absences because of the effects of the disease and will soon lose their coverage. 

The Cystic Fibrosis Foundation (CFF) is the world’s leader and advocate in the search for a cure. The CFF funds more research than any other organization and supports policies that ensure people with CF have access to the care and treatment they need to help them live longer and healthier lives. This organization makes recommendation for policy change through several venues.

One policy change is to improve and protect access to Medicaid, the program of last resort for many with cystic fibrosis who are struggling to get health care coverage. They support the Patient Protection and Affordable Care Act which has the potential to benefit people with chronic, life-threatening diseases and oppose legislation to repeal the Act. Following the passage of the ACT, the CFF promotes lobbyist in Washington who articulate its position on the needs of CF patients as the law is implemented.

Another way to promote change is to increase awareness of the disease by educating communities around you. Encourage members of Congress to join the Congressional Cystic Fibrosis Caucus, which serves as a voice for the cystic fibrosis community in the U.S. House of Representatives. Supporting the Caucus’s efforts to increase awareness of cystic fibrosis will help find ways to improve the quality of life and life expectancy for those suffering with cystic fibrosis.

It is always important to become informed and stay involved in your own healthcare. Review your health insurance plan each year. You can obtain a copy of your coverage and plan description from your employee benefits office. Carefully read and highlight all sections pertaining to chronic illnesses and any information regarding cystic fibrosis.

Individuals living with cystic fibrosis have a daily regimen of care that is significant to their continual health status and cannot tolerate an interruption of insurance coverage.

The main source of information for this blog post was found on or through links from the Cystic Fibrosis Foundation website: http://www.cff.org/GetInvolved/Advocate/Briefings/

1 comment:

  1. I got diabetes at the age of eight, I will be turning fifty in June. I don't think anyone should have to go without healthcare especially someone with a long term disease. I have no idea how I would pay for things without my insurance.

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