Michigan Proposes Advisory Council for Rare Diseases, Gaining Bipartisan Support
By WJR 760-AM
Let’s get the Rare Disease Advisory Council passed. Thanks to Marie Osborne at WJR radio (along with Tom Jordan) for doing the interview with our Laura Bonnell. The RDAC will help the 1 million people in Michigan with a rare disease. Governoer Whitmer will have to sign the bill into law when our Sponsor Rep. Jason Morgan (D) Ann Arbor gets this passed in the Full Senate. This is a bipartisan issue. Thanks to both Democrats and Republicans.
Why It’s Important That Doctors Advocate for Their Patients With Rare Disease
By Laura Bonnell, CF Contributor
In medical school, future physicians learn how the human body works, about medical procedures, hospital hierarchy, and how to work with patients. What they’re not learning about is current state and federal legislation. I believe doctors, nurses, social workers, and staff need to stay up to date on these matters so they can advocate on behalf of their patients.
Meet Laura Bonnell
By CanvasRebel Magazine
Laura, thanks for taking the time to share your stories with us today Alright – so having the idea is one thing, but going from idea to execution is where countless people drop the ball. Can you talk to us about your journey from idea to execution?
When my daughter Molly was diagnosed with cystic fibrosis (3 months after she was born in 1994) I reached out to the CF Foundation for support, education and answers to common questions when raising a child with a deadly disease. In 1994 their answer was, “We are a fundraising entity, we can’t help you. Ask your doctor.” Their answer made me mad, annoyed and left me in disbelief.
Chronically Ill in a War Zone
by ROBIN SCHWARTZ
An Israeli mother of three shares how she’s coping with cystic fibrosis amid the war.
Bonnell: Prescription drug board threatens development of rare disease drugs
For those of us who have loved ones living with a currently incurable disease, our hopes of finding a cure are at risk due to unintended consequences of policy changes by lawmakers in Lansing and Washington D.C.
Read the full article here
CF Foundation – CF Speaker Series featuring passionate people making a difference in the lives of people with CF
Will Corcoran in his CF Speaker Series mentions Laura Bonnell as an amazing advocate and change maker for the CF community.
Guest column: Michigan lawmakers should consult with patients when trying to help patients
A consistent topic of today’s political debate is the cost of health care and how to lower these costs, including drug prices. The debate often focuses on patients with complex health needs, who also face higher bills for their care. What I continue to find puzzling is, despite the narrative of lowering prices to help patients, the patient community is rarely consulted or engaged with while these policies are being developed.
Senate Panel Reports Prescription Drug Board Package
Senate Democrats took their first step Wednesday toward the creation of its proposed Prescription Drug Affordability Board by reporting legislation from the Senate Finance, Insurance and Consumer Protection Committee.
All three bills (SB 483 Track, SB 484 Trackand SB 485 Track) were reported 5-2. Committee Democrats voted yes while Sen. Kevin Daley (R-Lum) and Sen. Lana Theis (R-Brighton) voted no. Sen. Mark Huizenga (R-Walker), the committee’s minority vice chair, abstained on all three bills, citing a possible conflict of interest.
Read the full article here
Cystic Fibrosis in Egypt: Advancing Care
By Samya Nasr, MD, Director, Cystic Fibrosis Center
It was always thought by the Egyptian Medical Society that CF does not exist in Egypt. One major problem has been the lack of the physicians’ awareness of the disease. Addressing that issue began in 1997, first through yearly lectures and workshops at different national and international conferences in Egypt and universities. I also began visiting children’s hospitals in Cairo and following CF patients there. In addition, I led a study on a high-risk patient at Cairo University, Children’s Hospital in collaboration with a team of Cairo University physicians and Stanford University geneticists.
Read the full article here
Affordable Care Act Anniversary News Conference
The Bonnell Foundations Laura Bonnell participated in a news conference that was red on WWJ celebrating the anniversary of the Affordable Care Act. Thanks to Rep. Elissa Slotkin and Protect Our Care of Michigan for organizing. Thanks to WLNS, MIRS, WOOD TV, WWJ, and The Detroit News.