Category Archives: Awareness


The Cost of Dying

I had planned to publish the final installation of No More Cliff Diving (part two, part three) last week, but in light of the recent announcement of the FDA’s approval of Esbriet and Ofev I wanted to devote an entry to that. And, I needed a few days to stew contemplate.

On October 15, 2014 the FDA announced it was approving the use of Esbriet/ pirfenidone and Ofev/ nintedanib for the treatment of Idiopathic Pulmonary Fibrosis in the United States. Don’t get me wrong, I applaud the FDA for finally approving not one, but two drugs for the treatment of this devastating and terminal illness. However, I can’t help but think about all the patients for whom this news is too little too late. About all the patients that died waiting for something like pirfenidone in the U.S.

While I publicly retweeted the news from Pulmonary Fibrosis Foundation’s twitter feed, privately I scoffed at their generous use of “prompt” in relation to how long the approval took.

According to a press release on, Intermune first submitted a New Drug Application to the FDA on November 4, 2009. I completely understand the need for due diligence, particularly in respect to prescription drugs, but pirfenindone is not a new drug.

It has been in use since 2008 in Japan under the trade name Pirespa, and in India as Pirfenex, since 2010.  I could go on.

According to the Coalition for Pulmonary Fibrosis, approximately 40,000 people die from pulmonary fibrosis every year. So… that’s about 160,000 people dead in the four complete years since the initial drug application to the FDA. Sure, I’m biased; I’m emotionally invested. But I doubt the families of those 160,000 people (remember I’m not counting 2009 or 2014 so the estimate is on the low side)  think the FDA’s approval was all that prompt either.

An article in the NY Times published the same day as the approval stated Esbriet would cost roughly $94,000 a year.

“Roche said the wholesale price of Esbriet would be about $7,800 a month, or about $94,000 a year — two to three times what the drug sells for in Canada and Europe.”

And that’s down from one account I read (I’ll link to it, if I can find it again) that estimated the cost to be closer to $100,000. Either way the exorbitant cost will likely prevent patients, many of whom have been disabled by this disease, from receiving the drugs that can slow the progression of their disease.

The Pulmonary Fibrosis Foundation has alluded to a possible subsidy in some of their tweets, but I haven’t been able to find any concrete information on it.


September is Global Pulmonary Fibrosis Awareness Month

From the Global PF Awareness website:


a snapshot of the disease
• In the United States (US), IPF affects between 132,000 and 200,000 people.2, 4, 11
• In the US, an estimated 50,000 new cases are diagnosed each year.2, 4, 11
• In the European Union, IPF affects between 37,000 and 40,000 people.5, 17
• In the United Kingdom, more than 5,000 new cases of IPF are diagnosed each year.3
• PF can strike anyone, but tends to affect men more than women and usually occurs between the ages of 50 and 70.4, 6


In addition, according to the data on Global PF Awareness, the estimated survival rate of patients is 2-3 years after diagnosis. Please help spread the word about PF, and check their calendar to see if an event is happening near you.


Pulmonary Fibrosis Symposium


September 5-6, 2014

The Martin Center
960 Heritage Way
Brentwood, Tennessee 37027

8:30 a.m.-3:30 p.m. each day


Friday, September 5, 2014

8:00                Registration Opens / Coffee / Welcome

8:30                Pulmonary Fibrosis, presented by Dr. Lisa Lancaster

9:30                Connective Tissue and Pulmonary Fibrosis, presented by Dr. Leslie Crofford

15 min break

10:45               Genetics and Pulmonary Fibrosis, presented by Dr. Jonathon Kropski and Cheryl Markin

11:45                Palliative Care, presented by Sara Martin

12:15-1pm       Lunch

1pm                 Lung Transplantation, presented by Dr. Mark Steele

2pm                 Personal Experiences by Transplant Recipient, Sally Clinard

3pm                 Dismiss Group


Saturday, September 6, 2014

8:00                Coffee / Welcome

8:30                Douglas Herr, Patient group discussion & Michele Peters, PFF Ambassador, Caregiver group discussion

9:30                Pulmonary Rehabilitation, presented by Jeremy McNatt

15 min break

10:45               Research Review, presented by Wendi Mason, NP

11:45                PFF Ambassadors, Jeffery & Michele Peters, share their stories

12:15-1pm       Lunch

1pm                 Pulmonary Function Testing, presented by Dr. James Sheller and Phyllis Leonard, RRT

2pm                 Oxygen Therapy, presented by Sarah Roberts from Apria and Sandi Brim from Medical Necessities


3pm                 Dismiss Group

Click here to register.


Help Researchers Learn More About PF!

The Pulmonary Fibrosis Foundation is looking for patients and caregivers to participate in a survey.

Pulmonary fibrosis drug research and development is at a defining moment with two new therapies having achieved FDA breakthrough therapy designation. If you are living with PF, or if you are a caregiver, your voice through this survey will reach decision makers in Washington, DC and will inform health care professionals around the globe.”

You can participate by taking the survey here.


Team Sjogren’s Half Marathon & 10k

I received an email a few days ago from the Sjogren’s Syndrome Foundation and wanted to help spread the word. Here’s the details from the email:

Join Team Sjögren’s as we head to the most magical race on earth!

Come walk or run with us at the Walt Disney World® Marathon,
Half-Marathon & 10K weekend on January 9-11, 2015!
The Walt Disney World course will take you through Walt Disney World Theme Parks including Epcot and the Magic Kingdom before you finish a picture worthy finish back at Epcot, where you’ll receive your Mickey Mouse finisher medal!

As a team member, you will receive world-class training along with mentorship from past runners and foundation staff. Our team trainer and nutritionist will be there to help guide you and ensure you’re ready to complete the 6.2 or 13.1 miles. If you’re unable to run or walk in a race, consider recruiting someone you know to run or walk in your honor.

To learn more, we have scheduled two information calls where you will hear from past Team Sjögren’s members, SSF staff and our team trainer.
We hope you will join one of our calls:
Tuesday, August 19th at 12 PM EST

Tuesday, August 19th at 8 PM EST

To RSVP for a call and to receive our conference call number,
please contact Caroline Mullin at
Due to the popularity of the Walt Disney World® Half-Marathon & 10K, we have limited spaces available so sign up soon.

If you can’t join an informational call but want to receive more information about training and fundraising requirements, please contact Steve Taylor at (301) 530-4420, x211 or

Imagine the feeling when you cross the finish line
at the most magical place on earth!


World Sjogren’s Day

Today is World Sjogren’s Day.

I’m not a doctor, so it’s hard for me to explain this little know auto-immune disease to people when they ask about it. What I usually say is, “Well, it’s sort of like Lupus, but it targets parts of your body that make moisture.” And that’s an extreme over-simplification, but it gets the general idea across.

The Sjogren’s Syndrome Foundation gives a slightly more scientific explanation without getting too technical:

“Sjögren’s is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands.”

The SSF estimates there are currently four million Americans with Sjogren’s. My mom is just one of those people. Like IPF, there is no cure for Sjogren’s and the general treatment plan consists of throwing various drugs, ointments, and drops at the symptoms. For people with severe cases or who have organ involvement, doctor’s will often prescribe immunosuppressants.

Mom was given Imuran last summer, but that ended after two hospitalizations.

Please consider making a donation to SSF.