Boutin has been actively involved in health advocacy, policy, and both federal and state legislation throughout his career. He has designed and directed advocacy strategies for legislative initiatives, which have included issues ranging from access to healthcare to cancer prevention. Before joining the Council, Boutin served as the vice president of government relations and advocacy at the American Cancer Society for New England. In addition, he was a faculty member at Tufts University Medical School, where he lectured on healthcare policy.
At the CHI 2011 Annual Meeting, to be held Nov. 3 in San Francisco, Boutin will discuss the Moddern Cures Solution, a proposal to update the U.S. regulatory system to remove barriers to innovation and provide greater predictability in the search for answers to the nation’s unmet medical needs. It is not too late to register.
Q: Let’s talk about the impetus for the National Health Council. What was the driving need behind its formation?
A: The National Health Council was formed in 1920, so we have a long history. We were formed by a group of about 20 patient organizations that was looking for a trade association.
Q: Were there any other large trade associations of its kind in existence?
A: No, and there currently is nothing out there. We still serve in that function, so half our work is really directed at member services. Our work includes anything from board management, governance, corporate structures, volunteers, income development and benchmarking studies. We still maintain what is called the standards of excellence. The standards are a set of nonprofit standards, essentially, that the patient groups have to meet in order to be in membership. They are actually the most strident nonprofit standards in the industry.
Q: How is your organization funded?
A: We are a dues-based organization so about half our income comes from dues and the other half comes from sponsorships.
Q: Can you give me an example of some of the leading patient advocacy groups that make up your membership?
A: Some of the original founders include American Cancer Society, American Heart, American Diabetes and we run the gamut from those very large groups such as Easter Seals to small groups that represent various disorders like Sjögren’s disease or Alpha-1.
Q: What unique function does your group serve?
A: We are able, through our process, to engage the community, create a common understanding and then a common platform from which to advocate on systemic issues. And when they come together, they tend to have a great deal of impact.
Q: What are some of those messages you are working to convey through this organized effort?
A: In terms of public policy, we really are focused on two different things. One would be access to care, so we’ve been heavily involved with the implementation of health reform in a variety of different initiatives right down to the level of helping craft part of the regulatory language, as well as the legislative language, that created the Affordable Care Act. So, for example, we worked on defining the essential health benefits the Secretary of Health and Human Services is working on. We did our own actuarial analysis of what it would mean to put certain benefits into the design. We did recommendations on regulatory language.
On the other hand, we are extremely interested in development of new treatments, and so there is the dual focus.
Q: Tell me a little about your latest effort, the Moddern Cures Solution, which stands for Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network?
A: We are promoting legislative language that will do two things. It will, one, allow a company to bring a medicine to market without a patent, and that is significant. A lot of people don’t understand, but when somebody identifies a new potential medicine in the early pre-clinical phases, it typically will go to a company that could develop and commercialize that product and bring it to U.S. Food and Drug Administration approval. In 80 percent to 90 percent of those cases, new potential treatments are dismissed not because the science is not good, but because they have weak patents.
It just makes no sense from a patient perspective, and this legislation corrects that. It says if you’ve got good science, you can bring it to market, receive a return on your investment, and still allow a generic to enter at a predetermined time.
Q: Does this proposed change include medical devices?
A: That is the second half of the legislation. There are mechanisms that address specific issues such as creating the incentives to invest in the device/diagnostic arena.
Q: Is this modeled after any other country’s system?
A: No, and actually these initiatives were identified by the chief medical officers of the patient groups. In other words, they came to the council about five years ago and said, “We’ve doubled the investment in the development of new treatments, and we are not getting double the output of new treatments.” And they start to look at the lifecycles of the development of treatments and diagnostics and identify barriers.
And then asked us to look at possible solutions and we settled on these four major issues and developed solutions that we think could work, but are not actually modeled on existing solutions. We are, however, already seeing Europe and other countries look at this as a potential metric that they would copy.
Q: What has the reception been like so far from the policy side?
A: Extremely positive. It has been described by some as one of the few major health policies that has bipartisan support and the current Congress and administration could actually enact. It is exciting.
Q: What kind of dialogue do you hope to get out of the 2011 CHI Annual Meeting?
A: I am hoping, given the audience that will be at that meeting, that there will be a great deal of synergy on what we are doing on the development of new treatments and how it will positively impact the environment that your audience is working and living in.
I figured it is an incredible event, and I was really pleased to be invited to participate.
CHI-Advancing California biomedical research and innovation