Mapping Technology Supports Pulmonary Fibrosis Patients - Yale-PCCSM
November 18, 2021ID7179
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- 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.