Where:
New York

When:
April 27, 2007

Good afternoon. My name is Susan M. Cohen and I am the chair of the New York State Breast Cancer Network. I am also beginning my 14th year as a breast cancer survivor.

The Network is an organization of more than 20 community-based primarily breast cancer organizations in New York state. We have been in existence now for almost 10 years.

Each year Network member organizations provide support and education services to over 100,000 people affected by breast cancer throughout the state in communities that stretch from Buffalo to Long Island. We focus on all aspects of breast cancer research, prevention, detection, treatment, and policy concerns.

I am going to focus today on only 3 things: 1 global, 1 grounded in the near future, and 1 immediate.

The first point has to do with the Board's seeming to lack a rational funding agenda. The grants that are awarded, for both research and education, appear to be given out piecemeal.

We understand the limitations of the funds that the Board has for this purpose, but some attention should be paid to encouraging grants in particular areas in a coherent way.

We don't have answers to what those areas should be, but other programs do this, such as the Department of Defense's Breast Cancer Research Program and the State of California's Breast Cancer Research Program. No reason exists, really, to keep the Board from starting to work on this through its committee structure so that the committee can make some recommendations to the full Board on how to do this and what areas would be fruitful to focus on.

This leads to our 2nd point, the Board's committee structure. As we know you recognize, revitalization of the Board's committees is vital to its ability to function both efficiently and effectively. We want to encourage the Board to move forward with all due speed to bring those committees back to life and fill them with a diverse set of players from the various stakeholder groups so that the Board can move forward and start to realize its potential for meaningful research and education directed at making a difference, even in small ways, in the struggle to eliminate breast cancer from our lives.

These committees are desperately needed to take a hard look at what the Board has accomplished since it came into being and figure out what has worked and what has not, what needs major overhauling and what needs minor tinkering, what needs new and different approaches and what needs a bit of polishing and refinement, questions like that. Once the hard questions have been asked, the committees need to come up with possible answers and initiatives to solve or at least minimize the problems that have been uncovered or discovered in order to move the Board forward in a functional way.

Essential to the success of these committees is to make sure that the committees that you revitalize have breast cancer survivors on them in sufficient numbers to get some kind of cross section of the breast cancer survivor community'geographically, ethnically, and financially'to accommodate the different needs and perspectives, as well as similar ones, of various survivor groups. This is something that you can do something about without changing the law. All that is needed is an understanding of why this is important and the will to carry it out.

This brings me to our final point, which is the need for advocates not only on these committees but also on the Board itself. We know the Board has no control over who serves on it; this is a matter for the Legislature. We would ask the Board therefore to pass, once again, as it has done on more than one occasion in the past, a resolution asking the Legislature to add additional members to the Board from the breast cancer survivor communities throughout the state, with full voting rights, so that their perspective and experience can be heard and can inform and enrich the discussions and deliberations of the Board in carrying out its mandates under the law that created it.

The legislation behind this represents a law whose time has come; it came within a hair's breadth of passing, having gotten out of committee in the Senate in the final weeks of the legislative center and made it almost to the floor for a final vote. The Assembly had passed the bill earlier in the year. It is only a matter of time, within the next month this year or at most one more year, before this legislation becomes law.

The legislation is long overdue, and a resolution once again from this Board expressing the need for a diverse group of survivors from across the state, with a vote as well as a voice, to join Ms. Barish in her work would be extremely helpful at this critical juncture in the legislation's history.

Thank you very much for your attention to these 3 concerns. Our member groups look forward to working with you as partners in the future to make the HRSB a truly effective body that can make some small difference to the hundreds of thousands of people affected by breast cancer in New York State every day of the year.

Thank you.