New York State - Advocacy efforts

For two years we survived on the streets of London by selling The Big Issue, a magazine sold by homeless people on registered pitches throughout the UK. As I wrote in the blog of 17 November, our Big Issue pitches have been terminated (see blog of 11 November “Letter of complaint to the chair of The Big Issue Foundation Charity”); and although we can still sell the magazine on the pitches we had for two years, we have no priority whatsoever: we have to leave if the vendors to whom the pitches have been allocated come along, and not stand in on the pitches at all if a vendor is already there – the former was experienced by Declan this evening (a first in over two years). The fact that we don’t have pitches any more is particularly serious for me, because I am facing possible prosecution for begging.

In the previous blog “New York State home page” in respect of our website in support of embryonic stem cell research and therapeutic cloning, I presented, as well as the content of the New York State home page, the navigation menu of New York State under Law and Policy in the USA, which includes Advocacy efforts, a snag of which is presented below in a page from the Greenpeace International website. As soon as I have the few New York State snags done, I will quickly build a website loosely based on Greenpeace International and Greenpeace UK which I will then upload to a free hosting service. This snag cannot be read so below it I have transcribed the content. (The blog of 18 November, “Our sleeping pitch is soaked”, includes a snag of a page from the NAC website suspended on 8 March.)



The caption of the picture reads: University of Rochester School of Medicine and Dentistry. The University of Rochester played major roles in the events leading up to the 2007 stem cell research legislation, both in advocacy and in crafting the provisions and scientific language contained in the bill.

The navigation menu of Advocacy Efforts: NYAMR Member Organisations; University of Rochester White Paper.

And the main text:

Advocacy efforts

In the spring of 2007, the New York State Legislature committed $600 million over 11 years to be spent on stem cell research, an initiative that could potentially become the greatest scientific undertaking in the history of New York State. This initiative, administered by the Department of Health through the New York State Stem Cell Science (NYSTEM) program under the direction of the Empire State Stem Cell Board, could not have occurred without the support of the medical, scientific, voluntary health and patient advocacy communities who urged the state to embrace this promising field of science.

New Yorkers for the Advancement of Medical Research (NYAMR)

In August 2007, Dr Maria Mitchell, President of the Academic Medicine Development Company (AMDeC), a consortium of 30 of New York State’s medical schools, academic health centers and major medical research institutions, announced that AMDeC would become the host organisation for New Yorkers for the Advancement of Medical Research (NYAMR), a statewide coalition of 46 organisations advocating for state funding in support of regenerative medicine, including stem cell research. NYAMR was previously housed at the Parkinson’s Disease Foundation.

NYAMR grew out of AMDeC’s successful 2003 genomics-related conference in Albany, where the late actor and stem cell research advocate Christopher Reeve joined New York State Assembly Speaker Sheldon Silver. Reeve gave an impassioned speech in favour of stem cell research, while Speaker Silver announced passage by the Assembly of legislation expressly endorsing stem cell research. Speaker Silver, a strong proponent of biomedical research in New York, championed the bill which passed with an overwhelming majority in the Assembly, but, failed to get through the Senate.

However, out of the ashes of New York’s stalled effort to pass this bill, arose something promising – NYAMR. What began as a small like minded group including AMDeC, the Parkinson’s Disease Foundation, the Juvenile Diabetes Research Foundation and Hadassah, grew to several dozen diverse research, patient disease, economic development and citizen advocacy organisations.

From its inception, NYAMR took on a leadership role in advising and educating state legislators and policymakers about the importance – from a scientific and economic perspective – of state support for stem cell research. NYAMR consulted directly with Albany lawmakers to help design the Empire State Stem Cell Funding Program.

NYAMR continues to monitor closely the funding program to ensure its effective implementation.

University of Rochester

The University of Rochester played major roles in the events leading up to the 2007 legislation, both in advocacy and in crafting the provisions and scientific language contained in the bill. UR President Joel Seligman spearheaded the advocacy efforts of University Presidents and Chancellors, working with UR scientists and governmental relations staff to write a key White Paper entitled “New York and Stem Cell Research: A Scientific, Therapeutic, Economic, and Policy Analysis”, released on 6 February 2006.

This document, signed by the Presidents and Chancellors of 17 New York State universities and other institutions with substantial biomedical and life sciences research programs, details the competitive research environment that had emerged in the previous several years and its implications for the state’s biomedical research community and economy.

The Rochester White Paper makes the following case in support of NYS funding of stem cell research: Federal funding restrictions on human embryonic stem cell research have prompted several states to establish state-based research funds aimed at capturing the scientific and commercial potential of this new field of medicine. While New York’s research institutions are widely acknowledged to possess the scientific talent that would enable the state to be a major leader internationally in stem cell research, there is significant risk that researchers in New York will be recruited away to institutions in other states where they would have access to more resources to pursue their research. The loss of these scientists will have a significant negative ripple effect on a university’s entire research enterprise as research grants, junior scientists, biotech companies, and venture capital will similarly migrate to those institutions that are perceived to be on the cutting edge of biomedical research. A decline in the fortunes of New York’s biomedical research community in turn would have significant economic consequences for the entire state. New York’s State universities, teaching hospitals, and research laboratories contribute significantly to the state’s economy through employment, through spending and through the development of innovative products and concepts for the biotechnology and pharmaceutical industries.

The Empire State Stem Cell Board Funding Committee held a meeting on 27 June 2008 at the NYS Department of Health offices – State Health Commissioner Richard Daines presided as chairperson. Robin Elliott, NYAMR’s former chairperson, appointed to serve as one of thirteen members on the funding committee, suggested that in assessing the economic and other benefits of the NYSTEM initiative the ESSC Board and staff refer to the Rochester White Paper, according to the minutes of the meeting.