The Patient Pioneer Series profiles incredible individuals and companies that put the patient first and serve as fierce advocates for the patient population. If you are interested in being interviewed or contributing a guest post to our blog please email firstname.lastname@example.org.
Michele Rhee has served as bluebird bio’s head of Patient Affairs since January 2015. Formerly, Michele was Director of Strategic and Program Initiatives of the National Brain Tumor Society where she played an integral role in the overall development and strategy of the organization. Prior to joining the National Brain Tumor Society, she worked at Health Advances, a consulting firm specializing in life sciences new product marketing and commercialization. As a rare disease and cancer survivor, Michele also founded and serves on the Board of Costs of Care, an advocacy organization dedicated to transforming American healthcare delivery by empowering patients and their caregivers to deflate medical bills. She received her MBA from the Yale School of Management and her MPH from the Yale School of Public Health. She currently serves as on the Consumer Health Council of Massachusetts Health Quality Partners.
Michele and patient partner ALD Connect were recipients of MassBio’s inaugural Caring Collaborations award at the 2nd Annual Patient Advocacy Summit recognizing an outstanding patient-industry partnership.
Q: How does bluebird bio ensure the patient is at the center of the work that you do?
The heart of our company is the patient, from being our foundational inspiration to influencing how everyone at bluebird bio makes decisions. The culture is based on the knowledge that we are working to improve the lives of patients in a really transformative way, and the value that we provide as a company is based on our ability to provide true value to patients. Every new bluebird learns about what our patients and families have endured so that we understand what patients’ real unmet needs are, and in every major decision, we incorporate the patient perspective in the same way that we incorporate the perspective of other key stakeholders.
On a practical level, we ensure that our teams understand when and how to incorporate the patient perspective into clinical development, research, and decision-making. We also make sure to bring patients in regularly to talk about their lives and their day-to-day experiences.
Q: What have you learned from working so closely with both patients and industry professionals?
The line between patients and industry professionals isn’t as solid as I used to think it was. I personally am in this field because of my own cancer and rare disease experiences, and many of the industry professionals I’ve met and work with have a similar story: we’re all patients and families in some way, and we all have that same desire to do what’s best for patients. I am surrounded by people share this same priority and motivation, both on the patient and industry side, and it’s really wonderful to see that regardless of who you are or what organization you work for, you can have a positive impact on the lives of patients.
Q: What is your advice for life sciences companies that want to engage in patient advocacy initiatives?
Patient advocacy initiatives are about so much more than just providing sponsorships, although that is a part of it. The beneficial impact of integrated, well-planned patient advocacy or affairs initiatives reach across the company, very similar to an effective Medical Affairs group. However, Medical Affairs is a more well-established function or department at most companies, whereas engagement with patient advocacy groups and the patient community may require more changes in thinking and practice. Working with patients and patient leaders can provide amazing insights into patients’ lives and priorities, and that invaluable information can ensure that a company is making more informed decisions internally in the same way that incorporating the physician perspective can add value. Patient advocacy initiatives can and should be integrated into the larger business strategy, but it’s a new way of engaging. The willingness to accept and implement change needs to be central to those initiatives. Otherwise, it’s easy to revert back to a traditional sponsorship-only type of patient advocacy initiative as opposed to something that can have even more value for both the patient community and the company.
By: Peter Abair, Executive Director of MassBioEd
“Today’s Career Exploration Day has inspired me to pursue a career path in biotechnology because I got to see what people in this field do. Before today, I didn’t really have any idea.”
That statement, from a Chelmsford High School female student, came at the close of MassBioEd Foundation’s November 4th Career Exploration Day hosted at EMD Millipore in Bedford. Similar responses were provided among the 160 students who participated at Career Exploration Days at Amgen, Whitehead Institute, Novartis Institutes for Biomedical Research, Addgene, Leica Biosystems & Beckman Coulter Genomics.
Career Exploration Days, organized by MassBioEd and hosted at biotech companies and non-profit institutes across Massachusetts, provide an exceptional opportunity for high school students to visit life sciences labs and manufacturing facilities and gain first-hand knowledge of careers and activities in biotechnology directly from mentor workers at each site. The experience can be as powerful for the company volunteers as it is for the visiting students. As one volunteer mentor at Novartis reported,
On Thursday November 12th, MassBio hosted Meet the Press with a panel of some of the most influential journalists in healthcare and biotech including:
- Jessica Bartlett, Health Care Reporter, Boston Business Journal
- Doni Bloomfield, Biotech Reporter, Bloomberg News
- Stephanie Simon, Managing Editor of News, STAT
- Luke Timmerman, Founder & Editor, The Timmerman Report
The reporters shared insider tips to help the audience learn how to get their stories covered.
We’ve captured the top 10 tips in case you missed the event:
- Develop relationships with reporters and be sure to make meetings worth while.
- When pitching your story, look over a reporter’s past headlines to learn their style and the topics that interest them most.
- Preferred way to receive a pitch? Email!
- Press releases aren’t dead, but they are more useful as background so don’t obsess over wording. Write a short summary in your email and explain why this would be a great story.
- Originality and timeliness are key elements of a good pitch, and exclusives are ideal.
- When possible, connect reporters to the “decision-makers” at your company even if it is off the record.
- On drug pricing: It’s not going away so don’t avoid it. Focus on conveying the value of medicine and always be transparent.
- Respond to questions promptly and be willing to jump on the phone to explain technical elements.
- See an error? Call immediately! The reporter wants to know and is happy to make a correction. (Just remember an error is something that is factually incorrect, not a wording preference.)
- Data is valuable. Share it!
Happy pitching! We hope to see your story in the news soon!
1) FDA approves J&J drug for advanced multiple myeloma – Reuters, 11/16/2015
U.S. regulators have approved an experimental treatment from Johnson & Johnson that may offer hope to multiple myeloma patients who have run out of other options against the blood cancer.
2) UMass researchers achieve several ‘firsts’ in new use for CRISPR/Cas9 – BBJ, 11/16/2015
A new technique for so-called gene editing that formed the basis of well-funded Cambridge startups like Editas Medicine and CRISPR Therapeutics may have another use: Turning off genes that cause a rare form of muscular dystrophy.
3) After two-decade battle, Maynard’s AquaBounty gets FDA nod for genetically engineered salmon – BBJ, 11/19/2015
More than two decades after approaching federal regulators for approval, a Maynard company today says it now can produce and sell its genetically engineered, fast-growing salmon.
4) FDA approves nasal spray that reverses opioid overdose – STAT, 11/18/2015
A critical drug used to reverse opioid overdoses will now be sold as a nasal spray, a development that will likely broaden use of the antidote among family members and friends of addicts caught up in a growing national epidemic of drug abuse.
5) Kraft foundation gives $20 million to advance personalized medicine– Boston Globe, 11/19/2015
New England Patriots owner and philanthropist Robert Kraft is donating $20 million to advance personalized medicine, the growing field of research that holds the promise of new treatments for patients with debilitating diseases.
Lawmakers had a busy and productive month in October. In addition to electing a new Speaker of the House, legislators passed a two-year budget deal, debt ceiling increase, and temporary extension of the Highway Bill. The Senate also passed a bipartisan cybersecurity bill. Discussions continued over long-term transportation reauthorization legislation, and the House passed a long-awaited reconciliation package repealing key portions of the Affordable Care Act (ACA). The final two months of the year are expected to yield deals on the highway bill and an omnibus appropriations package to fund the federal government.
CONGRESSIONAL OUTLOOK FOR NOVEMBER
With the Senate and House in session together for only two weeks in November, lawmakers will work together to address issues running up against impending deadlines. This includes finalizing a deal on a multi-year Highway Bill by November 20 and negotiating an omnibus spending bill to fund the government past December 11. Congress will also spend November looking for a path forward on the vetoed National Defense Authorization Act and reconcile the House and Senate versions of cybersecurity legislation.
In the House, newly-minted Speaker Ryan will spend the first month in his new office setting the tone for his tenure and laying out a broad agenda for the coming months, including possible reform measures for House rules to assuage the House Freedom Caucus. In the Senate, lawmakers will first turn their attention to legislation blocking Administration rules affecting waterways in the U.S. The upper chamber is also expected to take up the House reconciliation package that repeals key portions of the ACA. Read the rest of this entry