Newsletter of the Bleeding Disorders Association of NENY, Inc.
Vol. 12 No. 1 - Summer 2008

The complete Newsletter is also available as a portable document format (PDF) file.

The opinions expressed in this newsletter are those of the authors alone and do not represent the opinion, policies or position of BDANENY, the Board of Directors or editorial staff. This material is provided for your general information only.

Dear Future Patients:

This may be a strange way to start a "President's Letter", but the truth we do not like to think about is that some day at some time we will need to utilize the health care system of our community; be it through preventive health care, illness, or god forbid accident. Will we be able to afford it? Will our insurance cover most or all of it or will the system of health care delivery even be there when we need it? Will there be the specialist, the equipment, and/or the nurses? Will the laws maintain our rights to quality health care at a reasonable price?

These questions should concern every individual in society and especially our bleeding disorders community. Those with the least always are the most affected when times become difficult. If the wrong changes are made or if no changes are made this may easily be all individuals with chronic conditions or diseases.

What should we do? Should we be reactive and try to change the unfair rules and laws after they are passed? Should we try to reopen the emergency rooms and the HTCs after they are closed, or try to have insurance companies reinstate our children's health care policy? NO! That is not the time to act. You cannot undo unnecessary surgery on women who were never diagnosed with vW because insurance did not have to cover the diagnostic test, so she had a hysterectomy for uncontrolled bleeding.

We must all be PROACTIVE. We must advocate for our spouses, our children, our families, our friends, and ourselves. This Association along with other New York State Chapters of the National Hemophilia Foundation, organizations, camps and individuals has formed an Advocacy Coalition to talk to our elected state representatives as a united front; to advance the quality of life not only for our community, but also for everyone in the state of New York.

We do not ask you to spend hours a day making telephone calls or writing your representatives. You do not have to read every line of the NYS budget or watch every vote on the legislative floor. We, as a group, will watch for issues affecting health care and insurance. We will need your support and early next year we will meet in Albany to have our voice, your voice heard. Join us and be heard.

Our united voice in Washington D.C. helped pass the Genetic Information Nondiscrimination Act Law. We can make an impact on our state for health care, fair insurance practices and laws for quality of life for all.

In closing, have a very fulfilling summer and stay safe.

Dave Huskie
President
Bleeding Disorders Association of Northeastern New York Inc.