Two new drug options give hope to those suffering pulmonary fibrosis

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Where there was once nothing … finally, something for patients suffering with a devastating lung disease. Not one, but two new drugs give hope to those running out of breath … and time.

Arlene Brescia, pulmonary fibrosis patient: “I would be huffing and puffing, a lot of shortness of breath.”

When her doctor told her the diagnosis?

Arlene Brescia: “I was devastated. I thought, ‘Oh my life is over with.’”

University of Chicago Medicine pulmonologist Dr Imre Noth says it’s not an uncommon reaction for patients diagnosed with idiopathic pulmonary fibrosis, an aggressive and deadly disease that causes scarring in the lungs.

Dr Noth: “The lungs get stiff and they get smaller. Because of the scarring, the air requires more work to get in, and it rushes out faster. So that means there’s more work to actually breathe and what you get is less. Eventually you suffocate.”

Arlene Brescia has outlived her original prognosis – on average, patients live about five years after symptoms surface. But two new drugs – pirfenidone and nintedanib – work at the molecular level to slow the fibrotic process and progression of the disease.

Dr Noth: “Both drugs roughly improved the rate of decline about 50 percent. What that means is, for patients who you would have expected to deteriorate over one or two years, may take two or four. Somebody who was going to take four to eight years anyway, is now going to take eight to 16.”

Arlene was fortunate to be part of an early clinical trial to test pirfenidone. She’s been taking the medication for years.

Arlene Brescia: “So here I am, seven years later.”

Seventy-six year old Bill Wisnasky is hoping for a similar experience. His diagnosis came in 2012.

Bill Wisnasky, pulmonary fibrosis patient: “He told me I had one to three years to live, which was kind of shocking. But after you overcome the shock, you have to continue with your life.”

Unable to enroll in one of the drug trials, Bill spent thousands of his own dollars on pirfenidone until it was FDA-approved last month.

Bill Wisnasky: “I purchased it from out of the country. It’s extremely expensive. I think it improved the quality of my life and generated hope for longevity. I no longer have shortness of breath. I can elevate the stairs without difficulty. I’m hoping it will give me a longer life.”

Arlene Brescia: “I’m living my life. I want to see my grandkids graduate at least high school, and we have 11, and the youngest is nine years old. I have a ways to go yet.”

The two drugs are extremely expensive – a one-year supply runs $94,000 to $96,000. But the drug companies say they will help those who can’t afford to pay – they have assistance programs available.

And for more support, you can contact the Pulmonary Fibrosis Foundation, which funded research on these breakthrough drugs.

 

To learn more about the Pulmonary Fibrosis Foundation, check out:

http://www.pulmonaryfibrosis.org/

 

To learn more about Dr Imre Noth and University of Chicago Medicine, go to:

http://www.uchospitals.edu/specialties/pulmonary/interstitial-lung/

 

From the makers of nintedanib/OFEV …

As a company, we take great care to price our medicines based on the cost of research and development. The OFEV wholesale acquisition cost (WAC) is $8,000 per month for a twice-daily treatment plan.

BI is committed to ensuring that patients who need OFEV have access to the drug. We understand that many patients may have varying insurance or financial situations, and so we have developed a broad range of financial support programs as well as access and reimbursement support to help healthcare professionals and patients.

BI will provide co-pay assistance of up to $30,000 a year to reduce out of pocket costs to $25 per month.

Under other programs, including the BI Patient Assistance Program, eligible patients will not have any out of pocket costs.

 

Patient Support Services/OPEN DOOR

BI is proud to be able to offer patients an effective therapy for this rare lung disease, together with comprehensive programs and services to support patients and healthcare providers as they begin therapy with OFEV.

BI’s comprehensive patient support program, OPEN DOORS™, will provide a broad range of financial and nursing support services.

An important goal of this program is to help patients who are prescribed OFEV gain access to the medicine quickly and affordably.

The OPEN DOORS™ program is accessible through www.OFEV.com and acts as a personalized resource providing services to patients and the caregivers that support people with IPF. Services and resources include:

Access to support from specially-trained nurses 24 hours a day, 7 days a week

Assistance in finding financial resources to support access to OFEV

Access to information about IPF and assistance in identifying local resources, such as support groups

Patient support offered by BI includes a comprehensive side effect management program to assist patients taking OFEV who experience adverse events

More information can be provided by calling an OPEN DOORS™ Patient Care Counselor at 1-866-OPEN DOOR (1-866-673-6366) or by visiting www.OFEV.com

 

From the makers of pirfenidone/Esbriet …

Our goal is to make sure that people who are prescribed Esbriet can get it as quickly and easily as possible.  We are using InterMune’s patient support program, called Esbriet CareConnect that was designed specifically for people with IPF.

As part of the Esbriet CareConnect program people taking Esbriet for IPF will be assigned to a nurse case manager who can help them:

Understand their insurance coverage;

Give them information about financial assistance programs if they are eligible;

Get direct shipments of the medicine from a specialty pharmacy; and

Answer questions and provide support information.

 

Additionally, through the Esbriet CareConnect program people prescribed Esbriet for IPF may be eligible for:

A 45-day free trial supply;

Co-pay assistance. The co-pay card covers patients’ co-payment or co-insurance amount so most eligible patients will not have any out-of-pocket for Esbriet.  The card covers up to $24,000 a year in out of pocket costs.

Free medicine for eligible patients who are uninsured or rendered uninsured.

For more information go to: www.Esbriet.com

 

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4 comments

  • Tina

    It’s wonderfu that they have a drug that can help people, but how the hell can they charge so damn much for the medicine? When will it be about helping people more then about earning ridiculous amounts of money! Makes me so angry and sad!

  • Janie Moss

    Yes! Have lost three family members to PF and a fourth has been diagnosed before age 50. My family has participated in studies to help research. We must fight this disease!