ILD Meeting

The university hospital that has treated my Interstitial Lung Disease (ILD) Hypersensitivity Pneumonitis has once a month educational meetings for people living with ILD. It is open to anyone from the area, from any hospital, from any doctor.

The classes began just over a year ago and I was so excited to learn more about the disease. It was not a great experience. So many people wanted to talk about their specific problems or care issues and there was a lot of whining going on. I never went back.

After getting the e-mail regard this month’s meeting, I embraced my goal this year to step out of my routines and expand myself, so I attended. It was great. All the whiners were gone and only 15 people were there. Some were newly diagnosed while others have been part of research groups for years.

We were introduced to Joe Blum (jblum@invacare.com), a representative from Invacare who makes portable oxygen systems. The goal in the industry is to build the lightest, smallest units primarily for travel. People with ILD need what is known as continuous flow instead of on demand. These POS’s are just now coming onto the market.

He brought in the new Invacare Solo 2, which allows continuous flow 1-3 LPM, or Pulse 1-5 LPM. It was the smallest and quietest unit I have seen. It runs about $5,000 but is rentable for trips. Airlines accept theses systems with no extra charges.

I also learned that Virgin and Southwest airlines are the most sensitive to people with oxygen needs and they make the process very easy. Delta, Air Canada and United are the worst. The stories I heard in this meeting were shocking.

It was also a shock to discover that most of the people in the room were flying on trips within the next month. Fly?!? I can’t fly. It was only later that I realized the reason I still can’t fly are my low Pulmonary Function numbers. Duh.

Next, researcher Archer Eller talked to us about the latest trials which were primarily for Idiopathic Pulmonary Fibrosis (IPF). If they can unlock the secret to fibrosis, it may lead to cures or treatments for other ILDs. He also discussed the research process from an idea through Stage IV trials. Very interesting. No wonder it takes years to bring a new drug to market.

The most exciting conversation was around a new drug specifically designed for IPF, which is on schedule to be approved by the FDA on May 5^th. It has flown through the process with excellent results with just a couple side effects of stomach issues and rashes. Prior to this drug, the only treatment for IPF was lung transplants and the prognosis was very bad. Most people only live 3 years after diagnosis. Now, with this new drug, they may not need the transplants and live a longer, fuller life. Here is a short blurb from the InterMune web site:

Description

Pirfenidone is an orally active small molecule drug that may inhibit collagen synthesis, down regulate production of multiple cytokines and block fibroblast proliferation and stimulation in response to cytokines. Pirfenidone has demonstrated activity in multiple fibrotic conditions, including those of the lung, kidney and liver.

Investigational Activity

Idiopathic pulmonary fibrosis (IPF) is a chronic, fatal lung disease characterized by inflammation and scarring of the lungs.

Pirfenidone for treatment of patients with IPF has been studied in multiple Phase 2 and three Phase 3 clinical trials. InterMune has completed a 779-patient Phase 3 program in patients with IPF (CAPACITY) and a New Drug Application (NDA) has been accepted for Priority Review by the FDA.

Investigational, not an FDA approved product.

The university hospital had 17 people who participated in this study and one of them was at the meeting. She has been on the drug since 2007 and is doing very well. Having participated in this study, she will be given the drug free of charge for the rest of her life. She called it a miracle drug.

At the first meeting a year ago, I met a nice man with HP who was also at this meeting. We chatted. He is in rehab three days a week and looked really good. He is stable. We compared drugs and numbers and he was thrilled to learn that I settled the Workmen’s Comp lawsuit.

It was a big day for me. It was a 1:00 meeting so I left the house at 11:15, drove 80 miles roundtrip, fought with the parking lot, hiked through the buildings, participated in a 2.5-hour meeting then returned home at 4:30. I was done. I slept like a baby.

I am going to the next meeting in May.