Cynthia
01-10-2006, 12:14 PM
Ladies and Gentlemen,
I have been following the discussions in this group for quite some time and have done a bit of posting of my own. I read Joe's recent thread about clinical trials with great interest. In that exchange, a number of folks discussed the utter frustrations we have all encountered during our journeys to combat breast cancer. The devastating diagnosis and treatment process is just the beginning; we must then frequently do battle with our insurance companies, employers and oncologists. Those of us who take the time to read, research and stay informed often find ourselves shut out from clinical trials that are testing promising drugs because of this or that exclusion. Bottom line, we need help. I firmly believe that the help has to start somewhere and where better than right here.
This website is remarkable because of the extraordinary men and women who contribute to it regularly. The collective intelligence, strength and determination of the breast cancer patients and loved ones who participate here truly could move mountains. I propose we join together to channel our talents, experience and frustrations towards achieving some real results. I would personally like to join the ranks of the many who are now out there fighting for us and would encourage anyone else who is so inclined to do the same. How? I’m not sure, but that is where each of you comes in. I would really appreciate your input as to how we can best help ourselves.
Allow me to tell you a bit about me. I am a private sector attorney and a partner in law firm in Washington, DC. My world was rocked three years ago when I was diagnosed at 43 with breast cancer; 4 positive nodes; Her2+++; ER+/PR+. My husband and I had returned four months prior from China having just adopted our only child (I took my suspicious lump to a breast “specialist” several times prior to the adoption but was told repeatedly that it was “just a cyst” -- another story for another time). Given that survival was my only option, I decided to tackle my breast cancer aggressively. I opted for a bilateral mastectomy with reconstruction, six months of chemotherapy and seven weeks of radiation. When my periods returned, I had my ovaries removed so that I could take Arimidex. I applied for and was accepted into the E75 vaccine trial at Walter Reed (my husband is retired military so I qualified to receive it there). After the results of the Herceptin trials were made known, I launched a personal crusade to get it. My oncologist was not onboard because I was then fourteen months out from chemo, but, after surveying oncologists across the country, I engaged the services of one who was and I now receive it every three weeks. I also insist upon regular PET/CT screenings in the absence of symptoms and am heading off on Friday for another brain MRI after prevailing upon the more sympathetic of my two oncologists to order one for me. So far, so good.
My legal career has exposed me to a variety of advocacy tasks. I worked in Southern California for ten years representing large property owners and cities relative to complex real estate projects. I relocated with my husband to the Washington, DC area about 11 years ago where I began working with banks and trade associations regarding a variety of litigation and regulatory matters. I have spent a good portion of my career traveling the country to stomp through the halls of courthouses and governmental regulators advocating for this and that. While I do not have a background in medical lobbying per se, I believe my personal experiences with breast cancer more than qualifies me for the job. Thus, I would like to marry my legal and advocacy experiences with my passion for all things breast cancer-related to help us all fight for what we need. I would be greatly honored if you would join me.
Thankfully, there is a great deal of money being raised and spent towards research that we pray will someday slay the breast cancer beast. Until that day arrives, however, more must be done for those of us who are literally fighting for our lives. Given the statistic that 1 out of 8 women will receive a breast cancer diagnosis in her lifetime, our numbers are huge and growing every day. We need a really loud voice, but no one can scream alone. So where do we go from here? I am not at all sure, but that is where you come in because we are a work in progress.
First, we need to fully understand who is already out there doing what. For example, the National Breast Cancer Coalition (NBCC) is a Washington, DC advocacy group. I would greatly appreciate your views on what they are doing. ASCO is another powerful association, but the primary interests it serves are those of the oncologists. The Susan G. Komen Breast Cancer Foundation and the Avon Foundation Breast Cancer Crusade are huge fundraising machines, but are not themselves lobbying organizations. The Abigail Alliance recently introduced a bill that would allow patients who have run out of options access to developmental drugs outside of the clinical trial setting, though this legislation is being actively opposed by the NBCC, and does not appear to have great vocal support.
Second, we need to identify what it is that we need to achieve. For example, what do we need from the FDA, our insurers, oncologists and lawmakers?
Third, how do we achieve our goals? Do we start our own organization or do we piggyback off the infrastructure of others who are already up and running?
Fourth, contacts, contacts, contacts. Everything that gets done in politics (local and federal) comes down to contacts. So I suggest we identify the key players in the network and determine how best to approach them in an organized fashion.
Fifth, how do we fund our efforts? The only thing more important than contacts in this town is money (since money has a remarkable way of getting those contacts to return our phone calls).
Prior to throwing myself into this project with a vengeance, I would greatly appreciate your feedback. Do you perceive a need, and if so, please let me know how you would like to help. The Internet connects us all so closely that we need not limit ourselves geographically in any way.
Thank you for whatever comments you may wish to offer. If you would like to communicate with me privately, please do so at clgilman1@yahoo.net.
Fight on,
Cynthia
I have been following the discussions in this group for quite some time and have done a bit of posting of my own. I read Joe's recent thread about clinical trials with great interest. In that exchange, a number of folks discussed the utter frustrations we have all encountered during our journeys to combat breast cancer. The devastating diagnosis and treatment process is just the beginning; we must then frequently do battle with our insurance companies, employers and oncologists. Those of us who take the time to read, research and stay informed often find ourselves shut out from clinical trials that are testing promising drugs because of this or that exclusion. Bottom line, we need help. I firmly believe that the help has to start somewhere and where better than right here.
This website is remarkable because of the extraordinary men and women who contribute to it regularly. The collective intelligence, strength and determination of the breast cancer patients and loved ones who participate here truly could move mountains. I propose we join together to channel our talents, experience and frustrations towards achieving some real results. I would personally like to join the ranks of the many who are now out there fighting for us and would encourage anyone else who is so inclined to do the same. How? I’m not sure, but that is where each of you comes in. I would really appreciate your input as to how we can best help ourselves.
Allow me to tell you a bit about me. I am a private sector attorney and a partner in law firm in Washington, DC. My world was rocked three years ago when I was diagnosed at 43 with breast cancer; 4 positive nodes; Her2+++; ER+/PR+. My husband and I had returned four months prior from China having just adopted our only child (I took my suspicious lump to a breast “specialist” several times prior to the adoption but was told repeatedly that it was “just a cyst” -- another story for another time). Given that survival was my only option, I decided to tackle my breast cancer aggressively. I opted for a bilateral mastectomy with reconstruction, six months of chemotherapy and seven weeks of radiation. When my periods returned, I had my ovaries removed so that I could take Arimidex. I applied for and was accepted into the E75 vaccine trial at Walter Reed (my husband is retired military so I qualified to receive it there). After the results of the Herceptin trials were made known, I launched a personal crusade to get it. My oncologist was not onboard because I was then fourteen months out from chemo, but, after surveying oncologists across the country, I engaged the services of one who was and I now receive it every three weeks. I also insist upon regular PET/CT screenings in the absence of symptoms and am heading off on Friday for another brain MRI after prevailing upon the more sympathetic of my two oncologists to order one for me. So far, so good.
My legal career has exposed me to a variety of advocacy tasks. I worked in Southern California for ten years representing large property owners and cities relative to complex real estate projects. I relocated with my husband to the Washington, DC area about 11 years ago where I began working with banks and trade associations regarding a variety of litigation and regulatory matters. I have spent a good portion of my career traveling the country to stomp through the halls of courthouses and governmental regulators advocating for this and that. While I do not have a background in medical lobbying per se, I believe my personal experiences with breast cancer more than qualifies me for the job. Thus, I would like to marry my legal and advocacy experiences with my passion for all things breast cancer-related to help us all fight for what we need. I would be greatly honored if you would join me.
Thankfully, there is a great deal of money being raised and spent towards research that we pray will someday slay the breast cancer beast. Until that day arrives, however, more must be done for those of us who are literally fighting for our lives. Given the statistic that 1 out of 8 women will receive a breast cancer diagnosis in her lifetime, our numbers are huge and growing every day. We need a really loud voice, but no one can scream alone. So where do we go from here? I am not at all sure, but that is where you come in because we are a work in progress.
First, we need to fully understand who is already out there doing what. For example, the National Breast Cancer Coalition (NBCC) is a Washington, DC advocacy group. I would greatly appreciate your views on what they are doing. ASCO is another powerful association, but the primary interests it serves are those of the oncologists. The Susan G. Komen Breast Cancer Foundation and the Avon Foundation Breast Cancer Crusade are huge fundraising machines, but are not themselves lobbying organizations. The Abigail Alliance recently introduced a bill that would allow patients who have run out of options access to developmental drugs outside of the clinical trial setting, though this legislation is being actively opposed by the NBCC, and does not appear to have great vocal support.
Second, we need to identify what it is that we need to achieve. For example, what do we need from the FDA, our insurers, oncologists and lawmakers?
Third, how do we achieve our goals? Do we start our own organization or do we piggyback off the infrastructure of others who are already up and running?
Fourth, contacts, contacts, contacts. Everything that gets done in politics (local and federal) comes down to contacts. So I suggest we identify the key players in the network and determine how best to approach them in an organized fashion.
Fifth, how do we fund our efforts? The only thing more important than contacts in this town is money (since money has a remarkable way of getting those contacts to return our phone calls).
Prior to throwing myself into this project with a vengeance, I would greatly appreciate your feedback. Do you perceive a need, and if so, please let me know how you would like to help. The Internet connects us all so closely that we need not limit ourselves geographically in any way.
Thank you for whatever comments you may wish to offer. If you would like to communicate with me privately, please do so at clgilman1@yahoo.net.
Fight on,
Cynthia