Date: 02/07/2013

Jean Pickford

One afternoon, three years ago, I received a call from Steve Katz, MD, Director of the National Institute of Arthritis, Musculoskeletal and Skin Disease (NIAMS) branch at the National Institute of Health (NIH). The NIH is “the hub” of all the leading medical research in our country funded by the federal government. Dr. Katz called to let me know that I was nominated by my patient advocate peer leaders to serve on their Advisory Council. I was flattered to be selected and I gladly accepted the nomination. My role on the Council is to represent patients when discussing programs, projects, and future initiatives spearheaded by NIAMS. I am also charged with voting on research grant awards recommended for funding after rigorous review by the Study Section groups.

My appointment began in 2010 and will last one more year. It requires me to travel to the NIH campus in Bethesda, MD, three times per year. I am honored and privileged to be working with this elite group of sixteen clinicians, scientists, and patient advocates who have dedicated their careers to helping those affected by arthritis, musculoskeletal, and skin disease.

Each council meeting follows a similar format but the topics and speakers change each session. The first council meeting of the year always begins with a welcome to new members by Dr. Katz. Four people rotate on and off each year. Next, Dr. Katz always highlights news and medical advances coming out of NIAMS’ funded work, grants, and programs. Once these updates and welcomes are completed, the presentations begin from different departments and centers at NIAMS and/or the NIH.

This week’s Council Meeting had six presentations. Leading the group was the Deputy Director of Extramural Research who spoke about research funding trends, currently low pay lines, and NIAMS resubmission policy. Each year, 10,000 new research applications are submitted to NIAMS for funding. Only 12% of previously funded applicants are awarded grants and 15% of new investigators are awarded grants. Wouldn’t it be nice if these numbers could be higher? 

Next I listened to a report from the Biomedical Research Workforce Working Group, which focused on training time, career trends, and salary rates for those who chose to focus their career in research. This was followed by a presentation about the new 113th Congress and what it means for NIAMS and the NIH. The big focus during this presentation was on the upcoming budget sequestration that is set to take place in March, if things don’t change in next month or so. It seems very likely that sequestration is inevitable at this point.

The next report focused on the intramural research program at NIAMS, which comprises 10% of the NIAMS budget and is 100% federally funded. Also discussed in this report was the NIH Clinical Center, which brings in 100 new patients per year, in addition to other patients, with unknown or obscure diseases to be studied by leading medical professionals.  A brief overview of NIH policy on inclusion of women and minorities in clinical research and the evaluation of NIAMS Centers Program was also presented.  Before taking a break for lunch, I learned about the NIAMS Forum for Clinical Mentored K awardees. The K awards are grants provided to young up-and-coming investigators who are given protected time to study under a mentor with the intent to become an independent researcher in the future.  The report showed that those who received a K award from NIAMS were more successful in getting R01 awards (very competitive independent research awards) than those who had not. The final report of the day was presented on the Office of Research on Women’s Health.

The Council Meeting always ends with a closed session where the Council Members vote on the current slate of grants that have been submitted and reviewed by the Study Section groups and received favorable scores. During some Council Meetings, there may also be discussion and/or voting on appeals received from investigators who challenge their scores.

Every time I go to one of these meetings, I am continually impressed by the level of detail and thoroughness that these programs delve into. The people who work on these projects leave no stone unturned and are acutely conscious of being fair and transparent. And, those who receive funding from NIAMS are among the brightest stars in their field. I am happy to share with you that skin disease research is alive and thriving at NIAMS. I just wish there was more funding to go around so more studies could be funded. You can help. Visit our advocacy page and learn how you can contact your member of Congress to support increased NIH funding.

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