[Ip-health] UACT letter to NIH Director regarding CAR T technology

Kim Treanor kim.treanor at keionline.org
Thu Aug 31 10:22:11 PDT 2017


UACT letter to NIH Director regarding CAR T technology
Claire Cassedy on 31 August 2017

On August 31, 2017, UACT sent a letter to Francis Collins, the Director of
the National Institutes of Health (NIH), regarding the emerging chimeric
antigen receptor T-cell (CAR T) technologies that are currently being
developed across a number of pharmaceutical companies and institutions.  On
August 30, 2017, the Food and Drug Administration (FDA) made the first
approval of a CAR T treatment, a leukemia treatment by Novartis for
children and young adults. Novartis announced it would charge $475,000 for
the treatment.

In the UACT letter to Dr. Collins, we ask the NIH to communicate more
information to public regarding the NIH role in developing, patenting and
licensing the CAR T technologies.

The text of the letter follows below, and a PDF of the letter can be
accessed here.

Union for Affordable Cancer Treatment
1621 Connecticut Avenue NW
Suite 500
Washington, DC 20009
Tel.: 202.332.2670

August 31, 2017
Francis S. Collins, MD, PhD
National Institutes of Health
9000 Rockville Pike
Bethesda, MD 20892
Email: Francis.Collins at nih.hhs.gov
Dear Dr. Collins,

The Union for Affordable Cancer Treatment (UACT) is a union of people
affected by cancer, their family members and friends, people who take care
of people with cancer, health care professionals and cancer researchers
committed to increasing access to effective cancer treatment and care. We
are particularly concerned about the rapidly escalating cost of cancer
medication and seek to fight for cancer treatment and care to be affordable
and available, everywhere, for everyone who needs it.

We are writing to ask the National Institutes of Health (NIH) to create a
page on the NIH web site that provides the details of every grant, patent,
patent license, CRADA and other types of agreements as well as every NIH
expenditure that are related to the development of CAR T treatments.

Under 15 U.S.C. § 3710a(c)(6), the NIH is required to keep a record of
CRADAs entered into: “Each agency shall maintain a record of all agreements
entered into under this section.”

We need access to authoritative versions of this information to engage in
informed discussions with the companies selling CAR T treatments on pricing
and affordability issues.

Also, please send us a list of the countries where the NIH will file (or
has filed) for patent protection on the many patents on CAR T owned by the

Finally, will the NIH enter into discussions with the Medicines Patent Pool
to provide licenses to the CAR T patents in developing countries?

We look forward to receiving your response to these requests and concerns.
Thank you.

Manon Ress, Acting Director, UACT
Jordan Donn Jarvis, Member, UACT Board of Directors
Ophira Ginsburg, MD, Member, UACT Expert Advisory Board
Gilberto de Lima Lopes Jr., MD, MBA, FAMS, Member, UACT Expert Advisory
Ruth Lopert, MD, Member, UACT Expert Advisory Board
Ilze Aiszelniece, Member, UACT Organizing Committee

CC: Senator Lamar Alexander
Senator Roy Blunt
Senator Patty Murray
Senator John Kennedy
Senator Bernie Sanders
Senator Al Franken
Senator Angus King
Senator Dick Durbin
Representative Lloyd Doggett
Representative Jan Schakowsky


Kim Treanor
Knowledge Ecology International
kim.treanor at keionline.org
tel.: +1.202.332.2670

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