I encourage everyone to attend conferences when you can. I meet the most interesting experts in the field of the nonprofit world. From scientists, to pharma, to other nonprofit execs like me. I was thrilled to meet Jenifer Waldrop. She joined the Black Women’s Health Imperative as the Executive Director of the Rare Disease Diversity Coalition (RDDC) in October 2022. 

The organization address challenges faced by rare disease patients of color.  They bring together rare disease experts, health and diversity experts.

Their Vision: a world without health disparities in rare disease patients’ communities.

Mission: to address the extraordinary challenges face by historically underrepresented rare disease patients as encompassed by social determinants of health (SDOH). Jenifer volunteers as the Professional Development Director of the National Association of Asian American Professionals (NAAAP) of Colorado.

Find more here: Rarediseasediversity.org

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Melissa Yeager, Executive Director and Co-Founder of Claire’s Place Foundation

Since the planning stages of Claire’s Place Foundation, Melissa has spent countless hours working for the cause and, of course, raising her two children, Claire (the foundation’s namesake) and Ellie.  With many years’ experience in project management and event planning, she has the drive and the experience needed to get the foundation off the ground as well as the personal history of raising a child with cystic fibrosis.  Melissa is also a strong supporter of many charities and fundraising activities in her community, mostly related to causes that support families and children living with this and other rare diseases.

Founding Claire’s Place Foundation has been a way for Melissa to give back and share her experience with other families living with cystic fibrosis.  “We have always been blessed with a supportive family and a wonderful group of friends.  It is my hope that we can provide the same type of support to families walking this path alone.  It definitely takes a village or in this case a foundation to raise a child with a chronic, life threatening disease like cystic fibrosis”

To learn more about Claire's Place Foundation visit: https://clairesplacefoundation.org

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Emily Schaller, 42, is a heroine with one goal in mind, to Rock CF.

A lot of laughs on this podcast with my friend Emily!  She talks about her health, the Foundation, new and old legislation and what's coming up in 2025!

Equal parts spark, wit and humor, Emily is claiming her victories against cystic fibrosis having launched the Rock CF Foundation in 2007 to heighten public awareness and raise funds to increase the quality of life for everyone with CF. Emily created and manages an internationally acclaimed line of merchandise to help fulfill the mission of Rock CF. Today, Emily’s battle against this deadly genetic disease is printed in Runner’s World, FORBES, The Atlantic and SPIN magazines, the New York Times, The Washington Post, USA Today, NPR and posted on Competitor.com, Shape.com, the Associated Press, and various cystic fibrosis focused educational websites. She is a marathon running, super teacher and a speaker, addressing parents, patients and audiences about the effects of cystic fibrosis and the ever changing and improving treatments being made. Through Emily’s humor and personal experience, she inspires the masses to transform their lives with exercise, diet and goal setting.

To get in touch with Rock CF: https://letsrockcf.org/rock-cf-half

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“Charity Care is the best kept secret in healthcare.” says Eli Rushbanks "Only 29 percent of the people who should be helped by 340B, are helped."

If, like me, you have not heard about Charity Care or Dollar For, I am glad you're here!  This podcast will tell you about both Charity Care and the nonprofit, Dollar For.  I learned about the program during a webinar by Patients Rising.

You'll learn more about your rights regarding healthcare, and about the help that's out there.

If you’re overwhelmed with medical bills, confused by insurance, your rights and about getting help, this podcast will be a wonderful education. 

Eli Rushbanks is an attorney who works at the intersection of medical debt and consumer protection. He currently is the General Counsel and Director of Policy & Advocacy at Dollar For, a patient advocacy non-profit that helps patients apply for hospital financial assistance. In that capacity he works with patients, advocacy groups, lawyers, state and federal regulators, and hospital leaders to improve patient access to and experience with financial assistance. He helped build Dollar For from the ground up which, so far, has helped relieve over $60 million in debt for nearly 20,000 patients. 

His work has been featured in publications such as the New York Times, Wall Street Journal, and NPR. His reports on charity care policy have been cited by the CFPB and have been the basis for class action lawsuits for charity care violations. Eli says, "Fourteen percent of people who applied to a hospital for Charity Care, never heard back from the hospital.  There is not uniformity on how these programs are run." 

Terry Wilcox is the Chief Mission Officer with Patients Rising. Terry says that 340B sounds like a tax form, not something that patients know about. It’s not just to help patients, it’s to help hospitals too. But there has been some misuse of the program, “Expanded from 4 billion between 2000 and 2009, then the A.C.A codified the fact that they could expand, it ballooned to 66 billion dollars. And hospitals now have beautiful wings in their hospitals.”

The 340B Drug Pricing program was implemented by Congress in 1992 and it allows hospitals to purchase drugs at significant discounts to serve vulnerable populations. The program was originally added so that hospitals could treat underserved communities and help them stretch their resources.

To learn more about Dollar For: https://dollarfor.org

To learn more about Patients Rising: https://www.patientsrising.org/event/midday-masterclass-340b-in-focus-history-impacts-and-state-level-realities/

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Are titles important? As a rare disease parent, we think you're worthy of a Ph.D.  Listen to our fun conversation about all things rare and the much needed title we may need (or not) to get things done.

As a reminder, Beth Vanstone is the mother of two daughters, one who has CF. Madi is 23 years old.  Beth is a huge advocate in Canada, and much of the progress made in the rare disease space is thanks to her efforts.

Laura Bonnell and Beth Vanstone have been advocating a total of more than 50 years combined, and they're not done yet. They need your help, on any scale that works for you (small or large).

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What is a Private Patient Advocate? Do you need one?

Laura talks to Dr. Elena Borrelli who is a Doctor of Medical Science and a Board-Certified Patient Advocate who helps people and families with their health care journey.  She practices in Shelby Township, Michigan. Dr. Borelli manages their healthcare as she tries to help them live their healthiest life.  She focuses on people diagnosed with cancer and rare disorders. 

Dr. Borrelli  has worked in healthcare for over 25 years. Apart from her experiences in professional practice, she has encountered frustration and discrepancies while personally navigating the healthcare system. She has been the provider, the patient, the daughter, the sister, and the parent facing the overwhelming healthcare system; and left feeling alone and confused. 

Her passion is to help patients navigate the chaotic healthcare system. No one should have to do it alone. 

Getting a second opinion is often a good idea or enrolling in a clinical trial. Dr. Borelli research best management options for undiagnosed or chronic disease patients, as well related insurance/billing issues. Which we can all relate to!

Dr. Borelli can also assist if you’re admitted to a hospital or rehab facility, and she communicates with the healthcare team and helps reduce medical errors. 

How to get a hold of Dr. Borelli: [email protected]

To hear her podcasts: https://pathwaypa.com/podcast/ 

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Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

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Vertex: https://www.vrtx.com

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Dylan Mortimer did the NYC Marathon. If you know him, you know that he had two double lung transplants. One in 2017 and one two years later in 2019.

His second transplant was in NYC and Dylan talks about what it was like to go back to the streets he could barely walk, pre-transplant. It so touching as Dylan chairs his story with us. I appreciate all the ways Dylan continues to inspire our CF Community.  Our last question is: will he do another one? What do you think he might say? Also, I bet we might see some of his well-known glittery artwork featuring some running in the future. We can only hope!

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Please consider making a donation: https://thebonnellfoundation.org/donate/

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Patient rights: do you know about the rights you have in regard to healthcare? There is a lot of information for you that Sara and Thayer serve to you here, in terms you can understand.  They both work for the Partnership to Improve Patient Care, or PIPC (a coalition).

Sara Traigle van Geertruyden is the Executive Director at PIPC. Thayer Roberts is the Deputy Director.  Sara, an attorney, joined PIPC in 2011 and serves at the firm, Thom Run Partners.  Sara focuses policies to advance a patient centered health system, from patient engagement in research to driving outcomes that matter to patients in healthcare payment and delivery.  Sara is a healthcare and welfare policy expert with over 25 years of experience, beginning her career on Capitol Hill working for former Senator John Breaux (D-LA) from 1996-2003, and later as an attorney at the law firm Patton Boggs.  Thayer joined PIPC in 2019. Thayer works with PIPC’s diverse membership of patients, healthcare providers, researchers, and other groups to ensure that patient centricity is at the core of the nation’s health care system.  Thayer has expertise in health care value assessments and their implications on patients and people with disabilities and continues to engage in this topic both at the Federal and State level. 

Chair of PIPC: (From their website) Tony Coelho is a former United States congressman from California, and primary author and sponsor of the Americans with Disabilities Act. Tony was elected to Congress in 1978 and served for six terms until 1989. He served on the Agriculture, Interior, Veterans Affairs, and Administration Committees during his tenure, specializing in disabled rights. In 1986, Tony was elected House Majority Whip. As the chief vote counter for his party, Tony oversaw a series of Democratic victories in the House on measures ranging from the budget to cutting off funds for the war in Central America. Tony was the original author of the Americans with Disabilities Act, signed into law by President George H.W. Bush. By 1994, the U.S. Census Bureau reported that some 800,000 more people with severe disabilities had found employment than were employed when the bill was first enacted. Tony currently serves as the DNC Disability Council Chair, seeking to ensure that the political process is accessible to people with disabilities. President Bill Clinton appointed Tony to serve as Chairman of the President’s Committee on Employment of People with Disabilities, a position he held from 1994 to 2001. He also served as Vice Chair of the National Task Force on Employment of Adults with Disabilities. In 1998, Clinton appointed Tony as the United States Commissioner General at the 1998 World Expo in Portugal. Clinton also appointed Tony as Co-Chair to the U.S. Census Monitoring Board, a position he held until his appointment as general chairman of the Gore presidential campaign.

Sara and PIPC work with nonprofit organizations, like The Bonnell Foundation to help us to understand and keep track of all the legislation on the books, and coming down the pipeline. 

To contact PIPC go to: https://www.pipcpatients.org

To find PIPC on social media check them out at: @PIPCpatients (on twitter and LinkedIn)

Another resource Sara and Thayer suggest: https://www.patientaccessproject.org

Acronym's used during this podcast: 

Prescription Drug Affordability Board (PDAB)

Rare Disease Advisory Council (RDAC)

National Association for State Health Policy (NASHP)

Institute for Economic and Clinical Review (ICER)

Equal Value of Life Year Gained (EVLYG)

HR 485 Protecting Healthcare for all Patients Act   Read it here: https://www.congress.gov/bill/118th-congress/house-bill/485

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Life with CF is different for everyone. We have a lot of the same challenges, but we do grow with the disease differently.  Heather Trammell, CF Mom to 7 year old Charlie is married to Christopher, (for 13 years now). Heather is a legal assistant in the compliance department at Credit Acceptance.  Heather has so much CF Mom wisdom. I am glad to call her a friend. 

In 2019 Heather became a member of the family advisory board at C.S.Motts Children’s Hospital in Ann Arbor, and is a Parent Family Partner through the CFLN with the CF clinic at Motts for just over a year.

Heather is also a mentor in The Bonnell Foundation's Hand in Hand mentoring program.  Heather and her husband Christopher recently spoke at The Bonnell Foundation Night of Hope Gala.  We were lucky to have them!

Heather on FB: https://www.facebook.com/share/xkiJ9yoitqvTUEsV/?mibextid=LQQJ4d

Heather on IG:  https://www.instagram.com/heather61811/profilecard/?igsh=MWxwOTR5d3N0dHh1OQ==

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We’re in Canada for this podcast. Canadian Advocate Beth Vanstone has two daughters, one with CF and she’s hosting this podcast with Laura Bonnell.

Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rare disease strategy. We know American’s thinking that medically everything is better in Canada, but that’s not true. Many countries around the globe are struggling with the high cost of drugs for Rare Diseases, Canada is no exception. However, while we see industrialized countries around world looking at solutions to get rare therapies to patients quickly in an effort to maintain, improve and save lives, Canada remains stuck relying on a drug system designed to handle aspirin. Canada is the only country in the G7 without a national approach to rare diseases.

In February 2023 the Federal government announced a Rare Disease Drug Strategy with a 1.4 billion budget over three yrs to support it. The expectation was that drugs for rare diseases would have a quicker pathway and that it would address the specific challenges of the rare community and fill some of the many gaps to access. Sadly, that has not been the case thus far. 

Beth says, “There are a lot of challenges for patients, it’s very timely, there are a lot of gaps that will potentially harm patients.”  Touraj is one of the patients falling through the gaps.

Touraj says his FEV1 is 35 percent, which means he is potentially looking at a double lung transplant. “It is shocking that in the next two to three years I might be getting to the point of needing a transplant. We’re sad about it. My girlfriend is sadder about it than I am right now. I think of it as more of a reality.”  The hope would be access to a drug, despite his rare mutation, but the ability to try it.

To connect with Touraj

Instagram: https://www.instagram.com/tojyla/

Facebook: https://www.facebook.com/touraj.dehghan/

Linkedin:  https://www.linkedin.com/in/touraj-manshadi

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Vertex: https://www.vrtx.com

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