The War on Drug Prices

Cost of Drugs_cartoon
Most Americans ask the question, is the price I pay for prescription medications FAIR? In other words, what is the true cost of developing, making and selling a medicine, AND how much profit seems reasonable? This is what we tackled last week during our Community Conversation with experts from the U of Washington’s International Society for Pharmacoeconomics and Outcomes Research (ISPOR).

KEY FACTS THAT INFORMED OUR DISCUSSION
Tufts estimates that it costs $2.6 billion to develop an FDA approved drug, a number that increases 9% per year.  People in the US pay more for drugs than people in other countries for a few reasons: 1) we use more medications because we have better access to new ones, 2) we have a higher burden of chronic disease like diabetes and obesity, and 3)  in the US, the government protects drug manufacturing monopolies and limits price negotiations while other countries have more price regulation.

Another reason people in the US (and in Canada and Europe) pay more for medications is simply because, on the whole, we can afford to. Picture a world map, and picture all the people who live on Earth.  At 326 million, the US population is 4.4% of the world’s 7.5 billion people, but the US accounts for 50% of all medication sales in the world. Mind blown.

We are looking for VALUE in our medications.  We want medications that are novel and offer leaps of improved quality of life.  We are willing to pay more for medications that achieve this high bar, but there is a point for every person where price will exceed our ability to purchase a medication.

Finally, we learned about the trade-off between innovation and access.  Monopoly protection funds innovation. In turn, industry creates more new drugs in the long run that cost more money in the short run and poorer access. “But if new medicines aren’t invented, then no one can access them in the long term.” (ISPOR)  How can the market incentivize innovation if not through the almighty dollar?

DISCUSSION THEMES
Many in the room were for the first time faced with the reality that the US foots HALF the bill of medications in the world.  I don’t think anyone, besides the facilitators, was prepared for this data.  As the discussion dug deeper, we realized that our drug costs fund innovation of new medications and devices.  Despite the relationship between US drug prices and world drug innovation, many participants still did not think it FAIR that people in the US pay more than those in other countries.

Some held high the banner of altruism and seemed happy having the US play this role.  Others felt perhaps that even within the US that medication prices should be on a sliding scale based on what a household could afford.  Some shared personal stories about themselves or people they know who have had to choose between paying for their medications and paying other bills.

Yet others remained firm that prices could drop while maintaining innovation if pharmaceutical companies could lower their profits to reasonable margins.  Some attendees implied that companies could reduce their expenses by accelerating the clinical research process, a point that was strongly opposed by a former industry employee.  Pharmaceutical companies have no interest in accelerating clinical research in this manner because it would cause less confidence in drug safety.

As we were wrapping up our Conversation, we faced the question of whether or not the way we finance medications is sustainable.  Our vocal attendees had faith in the free market to correct anything that was broken.  Others remarked that the balance of medications on and off patent would also help with price competition once medications go off patent.

Our ISPOR facilitators emphasized that drug pricing is a complex ecosystem.  They recommended that consumers, scientists, policy-makers and health care providers and administrators continue to learn and share their perspectives, in venues such as Community Conversations, as much as possible in order to find a stable and sustainable relationship between medication access and innovation.

To read some excellent resources on the topic, visit the Community Conversation archive and scroll until you find the “war on drug prices” topic.

~JenWroblewski

Speak Up For Research Education Fund

How did science hook you?

Strawberry DNA extraction

Strawberry DNA extraction

Did you have a teacher whose lab was your favorite place to hang out in high school? Were you a biology graduate student who fought for better treatment of animals and found a calling in animal care or health ethics? Did you travel and see suffering that would be diminished with the right vaccination?

I got hooked as a member of the St John Ambulance Brigade in New Zealand where as a teenager I was able to volunteer in ambulances, hospitals and rest homes and saw evolving treatments driven by research.

I’m both excited about science and concerned about its future. I see a growing distrust in biomedical research, waning science literacy and an almost perverse celebration of anti-science sentiments; this all of course at a time when new biomedical research breakthroughs are occurring on a daily basis. Here at NWABR, we see the possibilities of science and are excited by the opportunities for young people to get hooked into fascinating and important science fields—but we also see a gap in the science education for the general public that results in twisted logic, misinformation, hijacked conversations and bad policy decisions.

NWABR bridges that gap, combats that misinformation, and leads spirited and informative conversations about complex issues related to biomedical research.  And we need your help.

Today, I’m asking readers you to join our newest fundraising initiative: the Speak Up For Research Education Fund.  Over the last two years more that 1,400 people have joined NWABR at a series of events:

  • Perhaps they volunteered for our popular Bio Expo that engaged close to 700 high school students;
  • Or they attended a Community Conversation on the ethics of end of life care, or vaccinations, or direct to consumer genetic testing.
  • Perhaps they are a professional dedicated to ethical protections for humans and animals in research and you attended one of our research conferences;
  • Or they attended our Security Conference and joined colleagues from across the country who are committed to keeping scientists, their facilities and their work safe.

This campaign to create a Speak Up For Research Education Fund is about protecting the belief and trust in biomedical research and ensuring that this work can continue robustly into the future.

Join the Speak Up For Research Education Fund and make a donation today by visiting:  https://donatenow.networkforgood.org/nwabr?code=Speak%20Up%20For%20Research

Alternatively you can send a contribution to the Northwest Association for Biomedical Research, 2633 Eastlake Ave E., Suite 302, Seattle WA 98102.

All supporters will be thanked by name in our public materials, unless of course they request to make an anonymous contribution.  All contributions will also be acknowledged with a tax deduction receipt.

This is a vital time for science – with the support of the Speak Up For Research Education Fund we can continue and expand the work of engaging students, families and communities with science.  With the support of this fund then one student at a time, one family at a time, one community at a time we will build support for, and trust in, biomedical research.

Thank you for Speaking Up For Research.

Kind Regards

 

Ken Gordon – Executive Director

Northwest Association for Biomedical Research

(P) 206-957-3337 (C) 206-595-2450

 

 

Local philanthropists drive biomedical impacts in the Northwest

Dear all

We are all so lucky to live here in the Pacific Northwest. We have this amazing environment, amazing weather (today for example the weather is perfect) and we live in a community of such smart and caring people.

We are also lucky that due to both current and past philanthropists – the Northwest is the place to be if you get sick. Lets be clear we are all going to die (and if you are interested in issues with end of life care you should see the planned Community Conversation that Jen Wroblewski is planning for June 3 titled “What do science, medicine and our culture tell us about end of life?”) – that said, the amazing research hospitals here in the Northwest will both prolong your life and improve the quality of care that we have during the period before we die.

There is no doubt that philanthropists have driven the development of the amazing research hospitals in our region. The Fred Hutchinson Cancer Research Center for example was inspired by the philanthropic efforts of Dr. William Hutchinson and was named for his brother Fred who died of cancer in 1964.

The philanthropic contributions to the Fred Hutchinson Cancer Research Center received a huge boost last month when the Bezos family donated $20m to support the Center’s work on cancer immunotherapy.

Paul Allen has been a major supporter of brain research with gifts of several hundred million dollars over the past decade.

The Gates Foundation in turn has been funding the development of innovative ways to stop diseases and improve health care.

There is no doubt that these significant gifts have driven a sea change in health care, and have put the Pacific Northwest at the leading edge of research driven health care improvements. I don’t ever want to get sick and I also note that getting sick here in the Northwest is one of the luckiest things that could happen – thanks in large part to all of these amazing donors.

Take care

Ken Gordon
Executive Director

Half of US adults 40 to 75 eligible for statins

A report in today’s Seattle Times suggests that cholesterol lowering statins will be in most of your futures.  Based on research from Duke University (which surveyed 4,000 people) it is now estimated that half of US adults between the ages of 40 to 75, and nearly all men over the age of 70 meet recently changed criteria for the use of statins. 

The guidelines for the use of statins were devised by the American Heart Association and the American College of Cardiology.  The Duke study estimates that half a million strokes and heart attacks over a ten year period could be prevented if the new guidelines were followed. 

There is some criticism of the new guidelines which favor the use of statins over other lifestyle changes (such as not smoking or working to reduce stress).

Ken Gordon

Executive Director

Community Conversation – 23andMe – What Can Your Genes Tell You

Last evening (Tuesday March 18, 2014) the Northwest Association for Biomedical Research (NWABR) hosted a Community Conversation that explored the issues around Direct-To-Consumer Genetic Testing.

These Community Conversations are a partnership between NWABR and the Institute for Translational Health Sciences at the University of Washington.  The purpose of these Community Conversations is to enable members of the public to become engaged with emerging issues in the bioscience realm.  Our hope is that an engaged public will be better placed to think through complex scientific and ethical issues, make informed contributions, build relations with experts in the field – and most importantly – provide those same experts with feedback from a community perspective on these issues.

At the Community Conversation hosted yesterday evening around 35 people gathered to discuss direct-to-consumer genetic testing services.  The company 23andMe has been providing this service to customers and approximately 650,000 people have both had their DNA tested and agreed to share their records to help build a DNA database that will, hopefully, in the future improve the accuracy of the findings that 23andMe can report to their customers.

The FDA has asked 23andMe to stop marketing the health benefits of this testing service and to no longer provide direct findings to customers about any health implications arising from the genetic tests that they perform.  The FDA is concerned that a consumer may misinterpret the results that they receive from 23andMe and subsequently make poorly informed health care decisions.

Yesterday’s Community Conversation was held at Kakao Chocolate + Coffee in Westlake.  The Conversation was facilitated by Sarah Nelson and Lorelei Walker, who are MPH and PhD candidates in Public Health Genetics at the University of Washington.  Following the presentations from Ms. Nelson and Ms. Walker the participants had a wide ranging discussion that touched on: privacy, trust, potential commercializing of DNA, the need for access to this information. the need for help in interpreting the information, resistance from some members of the medical community, the current lack of diversity in the 23andMe database, support for and frustration with the FDA and much more.

As we the staff at NWABR watched the conversation progress we were amazed that such a great group had come out on a Tuesday evening, given up their own time, and dived so eagerly into this complex area.  We were again reminded of just how rich discussions can be when these two sometimes diverse worlds come together.

Regards

Ken Gordon

Executive Director

Northwest Association for Biomedical Research

Registration Opens for NWABR’s Camp BIOmed, a new summer camp for high school students

Students entering 9th-12th grade can now sign-up for three of the four exciting summer camp sessions organized by Northwest Association for Biomedical Research (NWABR).  Each of the four camp tracks for Camp BIOmed are a week long and will be repeated for seven weeks, starting July 7 through August 23.

Students and parents can register and find additional information about the programs at www.nwabr.org/campbiomed.

The four summer camp programs focus on various topics relating to biomedical research and its ethical conduct, which include:

Bioethics thru Gaming
Protein Foldit! Be a Citizen Scientist
Hive Bio (Do it Yourself) Lab with Neuroscience
Lab Intensive Experience

Throughout the summer camps, students will take part in hands-on experiments at local biomedical businesses and research facilities, track their own findings as part of these experiments in lab journals, and tour local Seattle biomedical organizations. Each week of the summer camp will conclude with a culminating expo where campers will share all group and individual projects and contributions.

Early bird registration is open now for members for $450-$525 depending on track.  Non-members can begin registering on January 29 by signing up as a member ($25, plus the camp fee).  The price for camp for all will increase after March 31 by $90 for all tracks.  Financial assistance for partial camperships are available for students to attend the program.  The financial assistance application is available in the camp registration at http://www.nwabr.org/campbiomed

To register for Camp BIOmed check out www.nwabr.org/campbiomed

For more information, contact camp@nwabr.org

About NWABR

NWABRs mission is to promote the understanding of biomedical research and its ethical conduct. NWABR is dedicated to strengthening public trust in biomedical research, through education and dialogue. Through our diverse membership of academic organizations, biotech industry, non-profit research institutes, health care, and voluntary health organizations, along with extensive education programs, we foster a shared commitment to the ethical conduct of research and ensure the vitality of the life sciences community.

NIH Science Education Programs at Risk

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Proposed Reorganization of STEM Programs Threatens Funding for Health and Biomedical Education

Click HERE for the photobook of programs that will be impacted by the proposed reorganization.

On April 10, 2013, the White House submitted a FY14 budget request to Congress that radically reorganizes federally-funded Science, Technology, Engineering, and Math education (STEM) programs across multiple agencies, particularly the National Institutes of Health (NIH), National Oceanic and Atmospheric Administration (NOAA), and NASA.  In the proposal, 266 programs across 13 agencies would be consolidated into 122 programs. The budget proposal identifies the National Science Foundation, the Department of Education, and the Smithsonian as the primary agencies to organize and oversee future federally-funded STEM education efforts.

The following day, NIH held a conference call for all NIH grantees with funding for K-12 and informal science and health education projects. Dr. Larry Tabak, principal deputy director at NIH, announced that NIH is “pausing” funding for these programs. No new grants will be awarded. Non-competing renewals will be funded in FY 2013, but funding after that is uncertain. While increased coordination of STEM education across federal agencies is a laudable goal, several consequences of the proposed changes have profound implications for health and biomedical education in the US.  In particular, the elimination of the Office of Science Education at the National Institutes of Health and the Science Education Partnership Award  (SEPA) and similar science education programs at individual NIH institutes would threaten our national competitiveness, security, public health, and broader understanding of, and support for, science.

The NIH Office of Science Education (OSE) is scheduled to close at the end of September, 2013.  The OSE has had a tremendous impact on health science education through its many programs.  For example, OSE staff have distributed 450,000 Curriculum Supplements to approximately 100,000 educators across the U.S.  Their website receives over one million hits/year. If you are interested in receiving hard copies of their popular Curriculum Supplement series, please contact them at oseATscience.education.nih.gov.

The journal Science, in Wild Cards Remain After Proposed Reshuffle of STEM Education (April 19, 2013; vol 340, p. 258-259), notes the following:

Many science educators say that the proposed cuts would scrap effective programs just as the country needs to be doing more.  ‘”The SEPA program is the face of the NIH to the country,” says a grantee on one of the programs facing the chopping block. “It’s a vehicle for telling the public how NIH is translating science into practice,” says the grantee, who requested anonymity (p. 258).

The Co-STEM Committee at the Office of Science and Technology Policy is scheduled to release a strategic plan in mid-May with additional information.

The following link provides the complete list of programs under consideration to be paused/consolidated/eliminated:

Proposed STEM Education Reorganization Contained in the President’s FY14 Budget Request
Note especially the following list relative to health and biomedical education:

  • 30 Clinical Research Training Program HHS
  • 31 Curriculum Supplement Series HHS
  • 32 NIAID Science Education Awards HHS
  • 33 NINDS Diversity Research Education Grants in Neuroscience HHS
  • 34 NLM Institutional Grants for Research Training in Biomedical Informatics HHS
  • 35 OD Science Education Partnership Award HHS (SEPA)
  • 36 Office of Science Education K-12 Program HHS (NIH Office of Science Education)
  • 37 Public Health Traineeship HHS
  • 38 Science Education Drug Abuse Partnership Award HHS
  • 39 Short Term Educational Experiences for Research (STEER) in the Environmental health Sciences for Undergraduates and High School Students HHS

The following are points raised by the SEPA community in response to this development:

The Need for Health and Biomedical Science Education Programs Aimed at Grades K–12 and the Broader Public at the NIH

Health and biomedical sciences for grades K-12 are critical components of STEM education that help to ensure the nation’s capability to prevent disease and improve health. The proposed 2014 STEM education consolidation plan, however, eliminates K-12 and informal health and biomedical science education from its traditional place in the portfolio of the National Institutes of Health (NIH), and, by default, from the national STEM education agenda. No other federal agency supports programs comparable to those that would be lost.

More than 65 NIH-funded, K-12 health and biomedical science education projects currently operate in 40 states. These include “in-person” programs for more than 82,500 K-12 students and 5,750 K-12 teachers each year, and online programs that reach more than 20 million K-12 students and educators annually. NIH-funded exhibitions at some of the nation’s largest museums and science centers reach millions more students, teachers and families. With emphasis on engaging underserved populations, K-12 educational initiatives supported by NIH create thoroughly evaluated, science-rich interactive exhibits, curriculum materials, teacher professional development programs, student and teacher research experiences, and out-of-school learning opportunities. Ongoing NIH-funded K-12 educational programs benefit the nation in the following ways.

  • Improve preparation for, and access to careers in medicine, healthcare, biotechnology and biomedical research, with a focus on students from under-represented groups.Address health disparities by increasing access to college and health professions careers for under-served students, who are more likely than their peers to practice in medically underserved areas.
  • Build public understanding and support of biomedical research and clinical trials through educational programs that emphasize the relationship between NIH discoveries and their translation into positive health outcomes.
  • Encourage and facilitate involvement of biomedical research scientists in K-12 STEM education, and engage the resources of colleges, universities, medical schools and science museums in supporting K-12 STEM education.
  • Promote health literacy and better decision-making to address preventable health problems among America’s youth, reduce the burdens of chronic illnesses and infectious diseases, and enable consumers to make sense of genetic and other newly available health information.
  • Increase students’ interest in STEM topics through personally relevant examples from health and biomedicine that are aligned with recommendations of the Next Generation Science Standards.
For more than two decades, NIH has invested in the development of human capital and a unique infrastructure that is meeting our nation’s K-12 health and biomedical science education needs. These investments have produced significant, demonstrable outcomes that would not have been possible otherwise. Current K-12 programs sponsored by NIH, including the Office of Science Education, employ rigorous, results-oriented and cost-effective approaches to tackle major national issues, as listed below.
  • Jobs: Healthcare and biomedical science are crucial elements of the economy. The US Department of Commerce estimates that healthcare accounts for $1.75 trillion in revenues and employs more than 14 million people (nine percent of the US workforce).
  • Provider Shortages: The nation faces an acute shortage of healthcare workers in all areas, and the problem is expected to grow. The American Association of Medical Colleges projects that there will be a shortage of more than 90,000 physicians—including 45,000 primary care physicians—by the end of the decade. About 55 million people already lack access to a physician.
  • Wellness and Disease Prevention: According to the Milken Institute, more than half of all Americans suffer from one or more chronic diseases, many of which are preventable. Healthcare spending is projected to reach almost 20% of the US gross domestic product by 2021. Racial and ethnic minorities suffer disproportionately from diseases such as cancer, diabetes and HIV/AIDS, but participate less frequently in programs that could help to reduce disparities.

Without K-12 health and biomedical science education initiatives, our nation will be unable to solve many of its most pressing workforce, economic and healthcare problems.

Download points above as a PDF: NIH-K12
Sources: Fixing the Doctor Shortage (AAMC) – Health Economic Fact Sheet – The Health and Medical Technology Industry in the United States  – Next Generation Science Standards – Milken Institute Center for Health Economics

Fig. 1. Distribution of 2012 Science Education Partnership Awards by State.
Nearly every state will be impacted by these changes.

SEPA MAP

Taking action:

Additional Resources
Please contact us at jchowningATnwabr.org with suggestions and corrections