[GRG] Personalized Medicine Proponents Coalition PMC survey results


Jul 23, 2014

Personalized Medicine Proponents Focus on Patients, Insurers
Alex Philippidis

Fulfilling the promise of personalized medicine will require more
patient education, greater access to treatments, and new
commitments by insurers to pay for the new drugs, an umbrella group
that represents more than 200 academic, industry, patient,
provider, and payer communities said today.

The Personalized Medicine Coalition (PMC) cited a survey it
commissioned that showed only 38% of respondents had ever heard of
“personalized medicine”—the targeting of new drugs to patients most
likely to benefit from them, using diagnostics to identify

PMC and other proponents say personalized medicine has the
potential to revolutionize disease treatment and contain spiraling
healthcare costs. Only 11% of those surveyed said their doctor had
discussed or recommended personalized medicine to them.

Amy M. Miller, Ph.D., evp of PMC, told GEN the coalition thinks one
reason for the lack of patient awareness was the dearth of
personalized medicine products and services until lately. That
number has climbed, according to PMC, from 13 a decade ago to 113.

“Personalized medicine leads the way in cancer, but there are fewer
examples in chronic disease conditions, and I think that’s the
other reason why awareness is low,” Dr. Miller said.

A key role in raising patient awareness of personalized medicine,
she added, will be played by providers: “They have a very large
role to play in raising awareness with the general population about
what personalized medicine is and how it can impact healthcare and
improve quality.”

During a panel discussion of survey results at the National Press
Club in Washington, D.C., Dr. Miller joined three experts in
agreeing that advancing personalized medicine will require
professionals to agree on a term of art—all agreed on personalized
medicine—and to publicize successful treatments.

“If an expectant mother would be able to say that a genetic test
might be able to identify if her fetus is going to be healthy,
that’s important,” said Raju Kucherlapati, Ph.D., Paul C. Cabot
Professor in the Harvard Medical School Department of Genetics.
“For a patient who is suffering from cancer to be able to hear us
say, ‘What is the drug or combination of therapies that is most
likely to be effective in your case?’ That’s what resonates with

Dr. Kucherlapati was joined on the panel by Randy Burkholder, vp of
policy at Pharmaceutical Research and Manufacturers of America
(PhRMA); Donna Cryer, J.D., president and CEO of the Global Liver
Institute; and Mark Richards, svp and management supervisor with
survey conductor KRC Research. They joined Dr. Miller in unveiling
findings from the survey, which questioned 1,024 American adults by
landline and mobile phone from March 5–16. The margin of error for
the total sample was plus or minus 3 percentage points.

According to the survey, almost two-thirds of respondents (65%)
reacted mostly positively to a description of personalized
medicine, with 37% saying they were very likely to undergo a
diagnostic test toward an individualized treatment plan. Another
40% said they were “somewhat’ likely.

However, more than two-thirds of patients pinpointed two
overlapping concerns with personalized medicine—that their insurers
won’t cover it (69%) or they cannot afford it (67%).

PMC is calling for insurers to fund new personalized treatments.
That is near-certain to be resisted by the payers, which have
balked at reimbursing providers for the sky-high price of new drugs
designed for subpopulations and want drug developers to shoulder
more of the cost. Drugmakers also balk at paying more, contending
that it would slow down the development of new medicines, and that
they need to recoup R&D expenses.

Yet the developers face growing political pressure to contain drug
costs. Since March, four Democrats in the Republican-majority U.S.
House of Representatives have criticized Gilead Sciences for
charging $84,000 per 12-week treatment for the chronic Hepatitis C
virus treatment Sovaldi™ (sofosbuvir). One of the four, U.S. Rep.
Henry A. Waxman (D-CA) is set to join two advocacy groups Wednesday
in calling for reduced Medicare drug costs.

Waxman is ranking member of the House Committee on Energy and
Commerce, which on Wednesday will host a “21st Century Cures”
roundtable talk on personalized medicine whose speakers will
include PMC President Edward Abrahams, Ph.D.

“We need to have a conversation about how to streamline development
and approvals for personalized medicine products and services”—both
drugs and diagnostics, Dr. Miller said. “We need to talk about how
to streamline FDA processes for co-developed drug-diagnostic
combination products, how to get those to market more quickly. And
when we talk about a standalone diagnostic, we need to talk about
what kind of evidence needs to be presented to payers, so they feel
comfortable and confident in covering those innovative tests.”

She said payers can be persuaded to support new tests that show
clear benefits, citing recent decisions by insurers to reimburse
providers for noninvasive prenatal tests for trisomy disorders such
as Down syndrome.

“We see this as an opportunity to discuss what personalized
medicine means holistically,” Dr. Miller said.


About Johnny Adams

My full-time commitment is to slow and ultimately reverse age related functional decline to increase healthy years of life. I’ve been active in this area since the 1970s, steadily building skills and accomplishments. I have a good basic understanding of the science of aging, and have many skills that complement those of scientists so they can focus on science to advance our shared mission. Broad experience Top skills: administration, management, information technology (data and programming), communications, writing, marketing, market research and analysis, public speaking, forging ethical win-win outcomes among stakeholders (i.e. high level "selling"). Knowledge in grant writing, fundraising, finance. Like most skilled professionals, I’m best described as a guy who defines an end point, then figures out how to get there. I enjoy the conception, design, execution and successful completion of a grand plan. Executive Director Gerontology Research Group (GRG). Manages Email discussion forum, web site, meetings and oversees supercentenarian (oldest humans, 110+ years) research. CEO / Executive Director Carl I. Bourhenne Medical Research Foundation (Aging Intervention Foundation), an IRS approved 501(c)(3) nonprofit. http://www.AgingIntervention.org Early contributor to Supercentenarian Research Foundation. Co-Founder Geroscience Healthspan Forum. Active contributor to numerous initiatives to increase healthy years of life. Co-authored book on conventional, practical methods available today to slow the processes of aging – nutrition, exercise, behavior modification and motivation, stress reduction, proper supplementation, damage caused by improper programs, risk reduction and others. Fundamental understanding of, and experience in the genomics of longevity (internship analyzing and curating longevity gene papers). Biological and technical includes information technology, software development and computer programming, bioinformatics and protein informatics, online education, training programs, regulatory, clinical trials software, medical devices (CAT scanners and related), hospital electrical equipment testing program. Interpersonal skills – good communication, honest, well liked, works well in teams or alone. Real world experience collaborating in interdisciplinary teams in fast paced organizations. Uses technology to advance our shared mission. Education: MBA 1985 University of Southern California -- Deans List, Albert Quon Community Service Award (for volunteering with the American Longevity Association and helping an elderly lady every other week), George S. May Scholarship, CA State Fellowship. BA psychology, psychobiology emphasis 1983 California State University Fullerton Physiological courses as well as core courses (developmental, abnormal etc). UCLA Psychobiology 1978, one brief but fast moving and fulfilling quarter. Main interest was the electrochemical basis of consciousness. Also seminars at the NeuroPsychiatric Institute. Other: Ongoing conferences, meetings and continuing education. Aging, computer software and information technology. Some molecular biology, biotech, bio and protein informatics, computer aided drug design, clinical medical devices, electronics, HIPAA, fundraising through the Assoc. of Fundraising Professionals. Previous careers include: Marketing Increasing skill set and successes in virtually all phases, with valuable experience in locating people and companies with the greatest need and interest in a product or service, and sitting across the table with decision makers and working out agreements favorable to all. Information Technology: Management, data analysis and programming in commercial and clinical trials systems, and bioinformatics and protein informatics. As IT Director at Newport Beach, CA based technology organization Success Family of Continuing Education Companies, provided online software solutions for insurance and financial professionals in small to Fortune 500 size companies. We were successful with lean team organization (the slower moving competition was unable to create similar software systems). Medical devices: At Omnimedical in Paramount CA developed and managed quality assurance dept. and training depts. for engineers, physicians and technicians. Designed hospital equipment testing program for hospital services division. In my early 20’s I was a musician, and studied psychology and music. Interned with the intention of becoming a music therapist. These experiences helped develop valuable skills used today to advance our shared mission of creating aging solutions.
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