Mapping Technology Supports Pulmonary Fibrosis Patients - Yale-PCCSM

Transcript

• 00:00I never saw a physician breakdown
• 00:02in tears until my son Howard died.
• 00:05This effects a lot of patients.
• 00:07It really effects their life,
• 00:09their livelihood,
• 00:09their ability to do their work
• 00:11to do the things that they love.
• 00:12So there's a really unique
• 00:14role for the patient community,
• 00:16especially in the disease.
• 00:17It's less known.
• 00:28For patients diagnosed with pulmonary
• 00:30fibrosis, time is critical. That's
• 00:33why Yale partnered with
• 00:34Three Lakes Foundation.
• 00:36They understand the impact of
• 00:38the diagnosis and a working
• 00:39to inspire hope in patients
• 00:41suffering with the lung disease.
• 00:43They are doing this by collaborating
• 00:46and uniting with researchers and
• 00:48institutions to accelerate the
• 00:50development of promising new technologies.
• 00:52And treatments it is a cause and a
• 00:56message that is bigger than all of us.
• 00:59Comma
• 00:59fibrosis really deserves
• 01:01different recognition.
• 01:02Pulmonary fibrosis is a rare
• 01:03disease and so that's part of
• 01:05the issue with lack of funding.
• 01:07You can increase disease
• 01:08awareness so you can really make
• 01:10a tangible difference. Pulmonary
• 01:13fibrosis is a progressive fatal lung
• 01:15disease affecting some 5 million
• 01:18people worldwide, maybe more.
• 01:20The disease was insidious.
• 01:21We knew that my son.
• 01:23Who's going to die?
• 01:24Art Kirschenbaum
• 01:25lost his son and his wife to the disease.
• 01:28She died December 2012 and shortly
• 01:33after that we discovered that my son,
• 01:36he reported that he also
• 01:38had pulmonary fibrosis.
• 01:39He died almost exactly two years
• 01:41later in the same ward at Yale,
• 01:44New Haven, with the same physician,
• 01:46I can tell you that watching him
• 01:48die was a hell of a lot worse
• 01:50than watching my wife died. The
• 01:52heartbreak and loss is felt.
• 01:54By patient and physician alike,
• 01:56and is magnified by frustration
• 01:58over a lack of awareness and
• 02:00funding to fight the disease.
• 02:02This is disease that 50% of the patient
• 02:05will die within three to five years.
• 02:07The other thing the disease is concentrated
• 02:09so in certain age is around 6070.
• 02:11It's actually more common
• 02:13than many of the cancers.
• 02:15All of us are afraid of.
• 02:17Loss of a family member to pulmonary
• 02:19fibrosis and frustration over the
• 02:21diagnosis and lack of treatment
• 02:23options led to the motivated.
• 02:25Real efforts to make changes.
• 02:27It's incredibly important that we
• 02:29have foundations like the Three Lakes
• 02:31Foundation that can really help us
• 02:33bring recognition, bring funding,
• 02:34and really move the field forward.
• 02:36I think their focus on accelerating
• 02:40therapeutics, increasing awareness,
• 02:42making a measurable difference in
• 02:44the life of patients with pulmonary
• 02:47fibrosis is really exciting. Foundation
• 02:50funding, technology and collaboration
• 02:52resulted in dramatic innovation to
• 02:55start doing the pulmonary fibrosis Atlas.
• 02:57We wanted to do this technology of
• 02:59being able to profile every single
• 03:02cell in the pulmonary fibrosis lung
• 03:04to understand how abnormal they are.
• 03:07To try to start thinking how we can fix them
• 03:10through high resolution mapping,
• 03:12they've created a cellular
• 03:14blueprint of the human lung. We've
• 03:16never studied them at this detail
• 03:18and that's a completely new
• 03:19area of research and discoveries
• 03:22of completely new cell types,
• 03:24but I committed to three lakes it.
• 03:27We'll put the data public
• 03:29before we publish it.
• 03:30The pulmonary fibrosis cell Atlas is
• 03:33now an easy to use web tool for anyone
• 03:36and everyone, and we did it. It's
• 03:39hard to assess the impact.
• 03:40I know there's been around 20 new
• 03:43discoveries just in our field
• 03:45and pulmonary fibrosis fund
• 03:47this publicly available data
• 03:49innovation is leading to drug
• 03:51discovery and the repurposing of drugs.
• 03:54This is incredibly important
• 03:55because the two medications that
• 03:57are available on the market.
• 03:59Can slow progression and
• 04:00do have some side effects?
• 04:02They're not perfect medications, though.
• 04:04They're better than what we used to have.
• 04:05We need new medications that are better
• 04:08that can halt the progression of fibrosis
• 04:10that can have fewer side effects.
• 04:13And this is what we're working on here,
• 04:14and the idea is that drugs that reverse
• 04:17fibrosis in this computational method
• 04:19could be prioritized for clinical trials.
• 04:22More patient participation in
• 04:24clinical trials is a necessity,
• 04:26as researchers work to slow the disease.
• 04:29And provide hope for those who
• 04:31have already suffered enough.
• 04:33You're not supposed to see your
• 04:35children die, and that was terrible,
• 04:37terrible, terrible.
• 04:38The Three Lakes Foundation is
• 04:39really helping us accelerate time
• 04:41from discovery to patient care,
• 04:43and that's what is vital.
• 04:44That's really important, because in
• 04:46the future we would like to diagnose
• 04:48the disease early so that we could
• 04:50design interventions that cure it.