Host Dr. Anne Arvizu and Guest Dan Donovan

Dan has spent nearly three decades in the pharmaceutical industry on both the industry and service sides of the business – first with Pfizer then creating Envision Pharma, which was acquired by United BioSource Corporation. Dan’s introduction to the world of rare disease began in 2011 when he was appointed to the Board of Directors and later as Chief Business Officer of Cancer Prevention Pharmaceuticals. Dan is the primary visionary behind rareLife solutions.

Dan’s experiences and observations have led him to believe that there is a better, smarter way to engage all rare disease stakeholders and accelerate disease understanding and treatment success. He believes the power of collaboration is the linchpin to this fundamental change.

In this episode, Anne opens the show defining rare disease. A rare disease is a condition that affects fewer than 200,000 people, whereas Europe defines it as something that affects less than 1 in 2,000 people. Drug companies have not been interested in developing treatments for rare diseases; there just wasn’t the incentive. The drug companies would not be able to sustain the costs involved in developing medicine.

Dan gives his take on the importance of patient centricity in rare disease drug development. Patients have to educate their physicians because they typically know more about it than their doctors do. Patients can help develop these products in a smarter way than the drug companies could do alone.

When Dan first started working in the business, patients had little input in rare disease drug development. In the past three years, it has taken off. Now there is even a role called the chief of patient relations.

Then, Dan speaks about publications for rare diseases. These publications should differ from most medical publications. These publications should have:
Open and free access to the public.
Include patients and advocates as authors on the papers.

The patient journey is not in typical medical literature. Dan sat with a patient who had a rare disease. They looked at the psychosocial elements of the disease and the impact on their family. This woman has to see about ten doctors a year; there are substantial cost implications on this. Eventually, they were able to share this patient’s journey in a publication.

Later, Dan talks about ensuring patient-centricity happens. Pharmaceutical is a highly regulated industry. Anything that suggests that companies are doing direct-to-patient promotion will scare them – it comes with huge fines. Historically, pharmaceutical companies take a long time to make changes.


In this Episode:
About rare disease [ 1:50 ]
Why patient-centricity is critical in rare disease drug development [ 14:00 ]
Different rare disease events [ 21:10 ]
Publications for rare diseases [ 21:50 ]
Dan gives a patient example on publications for rare diseases [ 24:35 ]
How to ensure patient-centricity happens [ 28:10 ]
About rareLife solutions [ 30:35 ]

Quotables: 
“Of over 7,000 rare diseases, there are only 450 drugs that are approved.” -Dan Donovan
“HCPs need to recognize that patients have become major experts on their rare disease.” -Anne Arvizu
“1,200 companies are researching 1,900 rare diseases right now.” -Dan Donovan
“How do you go looking for what you don’t know?” -Anne Arvizu
“There is no reason patients can’t be authors on medical publications.” -Dan Donovan

Links Mentioned: 
rareLife solutions: https://rarelifesolutions.com/
rareLife solutions on Facebook: https://www.facebook.com/rareLifeSolutions/
Email rareLife solutions: contactus@rarelifesolutions.com
NIH: https://www.nih.gov/
NORD: https://rarediseases.org/
Global Genes: https://globalgenes.org/
Rare Disease Day 2020: https://www.rarediseaseday.org/

Host Dr. Anne Arvizu and Guest Dan Donovan
Dan has spent nearly three decades in the pharmaceutical industry on both the industry and service sides of the business &ndash; first with Pfizer then creating Envision Pharma, which was acquired by United BioSource Corporation. Dan&rsquo;s introduction to the world of rare disease began in 2011 when he was appointed to the Board of Directors and later as Chief Business Officer of Cancer Prevention Pharmaceuticals. Dan is the primary visionary behind rareLife solutions.
Dan&rsquo;s experiences and observations have led him to believe that there is a better, smarter way to engage all rare disease stakeholders and accelerate disease understanding and treatment success. He believes the power of collaboration is the linchpin to this fundamental change.
In this episode, Anne opens the show defining rare disease. A rare disease is a condition that affects fewer than 200,000 people, whereas Europe defines it as something that affects less than 1 in 2,000 people. Drug companies have not been interested in developing treatments for rare diseases; there just wasn&rsquo;t the incentive. The drug companies would not be able to sustain the costs involved in developing medicine.
Dan gives his take on the importance of patient centricity in rare disease drug development. Patients have to educate their physicians because they typically know more about it than their doctors do. Patients can help develop these products in a smarter way than the drug companies could do alone.
When Dan first started working in the business, patients had little input in rare disease drug development. In the past three years, it has taken off. Now there is even a role called the chief of patient relations.
Then, Dan speaks about publications for rare diseases. These publications should differ from most medical publications. These publications should have:
<ul>
<li>Open and free access to the public.</li>
<li>Include patients and advocates as authors on the papers.</li>
</ul>
The patient journey is not in typical medical literature. Dan sat with a patient who had a rare disease. They looked at the psychosocial elements of the disease and the impact on their family. This woman has to see about ten doctors a year; there are substantial cost implications on this. Eventually, they were able to share this patient&rsquo;s journey in a publication.
Later, Dan talks about ensuring patient-centricity happens. Pharmaceutical is a highly regulated industry. Anything that suggests that companies are doing direct-to-patient promotion will scare them &ndash; it comes with huge fines. Historically, pharmaceutical companies take a long time to make changes.
 In this Episode:
<ul>
<li>About rare disease [ 1:50 ]</li>
<li>Why patient-centricity is critical in rare disease drug development [ 14:00 ]</li>
<li>Different rare disease events [ 21:10 ]</li>
<li>Publications for rare diseases [ 21:50 ]</li>
<li>Dan gives a patient example on publications for rare diseases [ 24:35 ]</li>
<li>How to ensure patient-centricity happens [ 28:10 ]</li>
<li>About rareLife solutions [ 30:35 ]</li>
</ul>
Quotables: 
<ul>
<li>&ldquo;Of over 7,000 rare diseases, there are only 450 drugs that are approved.&rdquo; -Dan Donovan</li>
<li>&ldquo;HCPs need to recognize that patients have become major experts on their rare disease.&rdquo; -Anne Arvizu</li>
<li>&ldquo;1,200 companies are researching 1,900 rare diseases right now.&rdquo; -Dan Donovan</li>
<li>&ldquo;How do you go looking for what you don&rsquo;t know?&rdquo; -Anne Arvizu</li>
<li>&ldquo;There is no reason patients can&rsquo;t be authors on medical publications.&rdquo; -Dan Donovan</li>
</ul>
Links Mentioned:&nbsp;
<ul>
<li>rareLife solutions: <a href="https://rarelifesolutions.com/">https://rarelifesolutions.com/</a></li>
<li>rareLife solutions on Facebook: <a href="https://www.facebook.com/rareLifeSolutions/">https://www.facebook.com/rareLifeSolutions/</a></li>
<li>Email rareLife solutions: <a href="mailto:contactus@rarelifesolutions.com">contactus@rarelifesolutions.com</a></li>
<li>NIH: <a href="https://www.nih.gov/">https://www.nih.gov/</a></li>
<li>NORD: <a href="https://rarediseases.org/">https://rarediseases.org/</a></li>
<li>Global Genes: <a href="https://globalgenes.org/">https://globalgenes.org/</a></li>
<li>Rare Disease Day 2020: <a href="https://www.rarediseaseday.org/">https://www.rarediseaseday.org/</a></li>
</ul>

In March of 2009, Todd S. Eury, launched the Pharmacy Podcast Show. Over the years, the Pharmacy Podcast has accumulated over 75,000+ listeners and subscribers and is the most popular and downloaded podcast about the Pharmacy Industry.

The Pharmacy Podcast Show transformed into the Pharmacy Podcast Network (PPN) in 2014 and will continue to collect the thought leading interviews with some of the most brilliant minds in Pharmacy with over 30 co-hosts. The PPN is a Digital Health Publication and Content Developing partner to the Pharmaceutical industry focusing on Specialty medications, pharmacy business supportive technologies, and industry trends.

The PPN is the world's largest network of podcasts dedicated to the pharmacy professional and industry insiders leading with our hosts interviewing dynamic people in the pharmacy industry making a difference for our profession, customers, and patients.

The definition of “Innovation” is: A new method, idea, product, or process. Processing, implementing, operating, or designing beyond the status-quo. Pharmacists are the HUB of Healthcare & the PPN is the Pharmacist's biggest fan. 

In March of 2009, Todd S. Eury, launched the Pharmacy Podcast Show. Over the years, the Pharmacy Podcast has accumulated over 75,000+ listeners and subscribers and is the most popular and downloaded podcast about the Pharmacy Industry.
The Pharmacy Podcast Show transformed into the Pharmacy Podcast Network (PPN) in 2014 and will continue to collect the thought leading interviews with some of the most brilliant minds in Pharmacy with over 30 co-hosts. The PPN is a Digital Health Publication and Content Developing partner to the Pharmaceutical industry focusing on Specialty medications, pharmacy business supportive technologies, and industry trends.
The PPN is the world's largest network of podcasts dedicated to the pharmacy professional and industry insiders leading with our hosts interviewing dynamic people in the pharmacy industry making a difference for our profession, customers, and patients.
The definition of &ldquo;Innovation&rdquo; is: A new method, idea, product, or process. Processing, implementing, operating, or designing beyond the status-quo. Pharmacists are the HUB of Healthcare &amp; the PPN is the Pharmacist's biggest fan.&nbsp;

Pharmacy Podcast Network

The Pharmacy Podcast Network is ranked as the number one podcast in healthcare dedicated to the Business of Pharmacy and TOP 25 Podcasts in U.S. Business News. The most influential voices in the pharmacy industry are published on the Pharmacy Podcast Network (PPN). The PPN is the leading audio authority of the pharmaceutical & pharmacy industry with more than 30 hosts, 1,200+ episodes, supporting more than 25+ pharmacy industry associations, with more than 80,000 listeners world wide. 

The PPN is an Audio Branding & Public Relations Communications company dedicated to the Pharmaceutical industry focusing on Community, Long-term care, Health System, Specialty, pharmacy business supportive technologies, and industry trends. 

Pharmacy Podcast™ is a registered trademark

The Pharmacy Podcast Network is ranked as the number one podcast in healthcare dedicated to the Business of Pharmacy and TOP 25 Podcasts in U.S. Business News. The most influential voices in the pharmacy industry are published on the Pharmacy Podcast Network (PPN). The PPN is the leading audio authority of the pharmaceutical &amp; pharmacy industry with more than 30 hosts, 1,200+ episodes, supporting more than 25+ pharmacy industry associations, with more than 80,000 listeners world wide.&nbsp;
The PPN is an Audio Branding &amp; Public Relations Communications company dedicated to the Pharmaceutical industry focusing on Community, Long-term care, Health System, Specialty, pharmacy business supportive technologies, and industry trends.&nbsp;
Pharmacy Podcast&trade; is a registered trademark

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