What It Means to be an Advocate
What does it mean to be an advocate? If you asked me that question 6 years ago I would not know what to say. Six years ago I was a cancer-free 5th grade Science/Math teacher whose biggest worry was would my students understand long division and pass the NJ- ASK test . Fast- forward 6 years and I am now a retired educator, a multiple myeloma survivor and a patient advocate.
I learned about advocacy a little at a time. First I learned how important it was for me to advocate for myself at doctors visits. This required a lot of practice. I was brought up in an era where the doctor knew best. Patients just followed the doctor's orders. Asking questions and seeking second opinions did not come naturally to me. I thought I would offending my doctor if I did so. Little by little I began to educated myself. That part came easy since I was a teacher. Then I began to speak up at my appointments. I would challenge myself to ask at least one question at each consultation. Gradually I became more comfortable engaging in discussions with my doctors. I now discuss journal articles I read with my oncologists, ask them questions about various treatment options, and request testing if I think I need it. I have become a partner in my healthcare team.
Once I felt comfortable becoming my own advocate I knew it was important to share what i learned about self-advocacy with others and encourage them to be active participants in their own healthcare. This gave me a renewed purpose in life. I was fortunate enough to be chosen to be a patient ambassador which allows me to travel throughout the country speaking to cancer support groups. I encourage patients to educate themselves,find support and make their voices heard. I am also an active member of an in person multiple myeloma support group and several online myeloma communities. I share what I learned about advocating with the people I mentor too.
In time I became more involved in the cancer support community. I began to volunteer at LLS and joined various patient advocacy groups such as ACS-CAN, LLS advocacy, and The IMF' s Myeloma ACTION team For the most part these groups wanted me to write to my Congress person about various issues facing cancer patients such as cancer drug shortages, cuts in research funding, and oral chemo parity. So I did. This was easy because I was sent an email ACTION Alert which contained a link to my representatives and a form letter to send. I only had to add a few lines about my cancer story before I pressed the submit button.
I also became more involved in my local myeloma support group. I was asked by the support group leader if I would be able to represent our community at the annual support group leader's summit sponsored by the International Myeloma Foundation. I agreed and off to Dallas I went. As I was registering for the summit I was approached by two young women who introduced themselves as the IMF advocacy team. They knew I was already signed up to receive the action alerts and inquired if I would be interested in participating in their newly launched Advocacy 101 webinar- 10 steps to meeting your legislator. Being a teacher I am always up to learning something new. So I registered for the web event.
The webinar was scheduled for the following month. During this educational event I learned everything I would need to know to set up a in-district meeting with my representative to Congress. I was given background information about my topic, a template to use to compose my message, letters to send to set up a meeting, follow-up thank you email templates, tweets to send after my meeting and a set of leave behind materials. It was a great webinar. I learned a lot. I was glad I participated in the webinar, but I didn't feel I was quite ready to set up a in-district meeting. Political advocacy was new to me and I was lacking confidence.
Then a phone call came. It was July and Congress was out of session for the summer. Meghan from the International Myeloma Foundation wanted me to set up an in district meeting with my State representative and ask him to sign on as a co-sponsor of The Cancer Drug Coverage Parity Act. I was hesitant at first to do this because politics was something new to me. Questions were racing through my mind. What would I say? Would the congressman take me seriously? What if he asks me something I didn't know? But I decided to challenge myself and set up a meeting. This did take some persistence on my part, but after several emails back and forth to my local representative's office a date was finally set. Meghan coached me every step along the way. We even had a mock rehearsal meeting. The actual meeting went well. I am happy to report that Rush Holt decided to sign on as a co-sponsor of this bill. I would like to think it had something to do with my meeting. It was at that point I realized the importance of patients stories and testimonies.
While the federal government was working on The Cancer Drug Coverage Parity Act at the national level several state governments were trying to pass similar state bills. Early in January 2012 Governor Christie signed The Oral Chemo Access Bill into law in NJ. NJ joined several other states in providing equitable insurance coverage of orally-administered cancer treatments. I was asked by Gina Londino,the LLS patient services manager, to attend a press conference at the State House that would spotlight NJ's new Oral Chemo Access Act. Prior to the actual conference we were privileged to meet Senator Winberg who fought for the passage of this bill. She insisted that the patients should also speak at the conference. Once again i was hesitant, but I spoke. I thanked Governor Christie for enacting this legislation. I explained that often the only available treatment option for a patient is an oral chemotherapy. I also explained that over half of the new agents being developed to treat cancer will be oral drugs and that patients don't choose an oral agent over an IV because they don't like needles, but because it offers them the best chance at survival. Prior to the passing of this legislation a cancer patient could be responsible for thousands of dollars in monthly prescription co-pays for the rest of their lives.
Thanks to the IMF and the LLS I found my voice and learned the importance of sharing my story. Personal stories have tremendous impact. As a teacher I know that learners acquire information the best through stories. Storytelling is an ideal teaching and learning tool. Stories are powerful. I have had the privilege to attend the LLS's annual Mission Day in Washington, DC. During the LLS Mission Day patients and advocates from across the country meet with elected officials to spread the word about the need to find a cure for blood cancers and improve the lives of blood cancer patients. The most powerful tool we have in convincing legislators to support a bill are our personal stories.
I know how important it is to make my voice heard and to share my personal story and now I am encouraging others to do the same thing both for themselves and for issues related to their care. This past fall I had the opportunity to work with the patient services manager of the LLS at my local Light the Night walk. I was the Advocacy Chairperson for this event.
Since I have been diagnosed with myeloma have learned the importance of being an advocate. I am thankful for the advocates in the past that have helped get cancer related issues noticed. I appreciate everyone who has taught me things about advocacy along the way. I still have much to learn, but I am grateful that I am well enough to pay it forward.
Some Issues that I know that cancer patients will face in the upcoming year are...
Cuts in government funding to the NIH that will impact cancer research
Educating law makers about oral chemoparity both on the state and federal levels.
There are 84 new members in the house of representatives that need this education
Working with our state government to make sure cancer patients are treated equitable when the ACA of 2010 is implemented.
And workings with the FDA for accelerated approval of drugs for orphan diseases.
I am sure this list goes on and on. I am a novice in this field.
I will do may best to advocate for these issues by writing to my congressman or setting up in district meetings, spreading the word through my social media networks, providing advocacy updates at my monthly support group meetings and being an active member in the Advocacy groups that I joined.
I learned about advocacy a little at a time. First I learned how important it was for me to advocate for myself at doctors visits. This required a lot of practice. I was brought up in an era where the doctor knew best. Patients just followed the doctor's orders. Asking questions and seeking second opinions did not come naturally to me. I thought I would offending my doctor if I did so. Little by little I began to educated myself. That part came easy since I was a teacher. Then I began to speak up at my appointments. I would challenge myself to ask at least one question at each consultation. Gradually I became more comfortable engaging in discussions with my doctors. I now discuss journal articles I read with my oncologists, ask them questions about various treatment options, and request testing if I think I need it. I have become a partner in my healthcare team.
Once I felt comfortable becoming my own advocate I knew it was important to share what i learned about self-advocacy with others and encourage them to be active participants in their own healthcare. This gave me a renewed purpose in life. I was fortunate enough to be chosen to be a patient ambassador which allows me to travel throughout the country speaking to cancer support groups. I encourage patients to educate themselves,find support and make their voices heard. I am also an active member of an in person multiple myeloma support group and several online myeloma communities. I share what I learned about advocating with the people I mentor too.
In time I became more involved in the cancer support community. I began to volunteer at LLS and joined various patient advocacy groups such as ACS-CAN, LLS advocacy, and The IMF' s Myeloma ACTION team For the most part these groups wanted me to write to my Congress person about various issues facing cancer patients such as cancer drug shortages, cuts in research funding, and oral chemo parity. So I did. This was easy because I was sent an email ACTION Alert which contained a link to my representatives and a form letter to send. I only had to add a few lines about my cancer story before I pressed the submit button.
I also became more involved in my local myeloma support group. I was asked by the support group leader if I would be able to represent our community at the annual support group leader's summit sponsored by the International Myeloma Foundation. I agreed and off to Dallas I went. As I was registering for the summit I was approached by two young women who introduced themselves as the IMF advocacy team. They knew I was already signed up to receive the action alerts and inquired if I would be interested in participating in their newly launched Advocacy 101 webinar- 10 steps to meeting your legislator. Being a teacher I am always up to learning something new. So I registered for the web event.
The webinar was scheduled for the following month. During this educational event I learned everything I would need to know to set up a in-district meeting with my representative to Congress. I was given background information about my topic, a template to use to compose my message, letters to send to set up a meeting, follow-up thank you email templates, tweets to send after my meeting and a set of leave behind materials. It was a great webinar. I learned a lot. I was glad I participated in the webinar, but I didn't feel I was quite ready to set up a in-district meeting. Political advocacy was new to me and I was lacking confidence.
Then a phone call came. It was July and Congress was out of session for the summer. Meghan from the International Myeloma Foundation wanted me to set up an in district meeting with my State representative and ask him to sign on as a co-sponsor of The Cancer Drug Coverage Parity Act. I was hesitant at first to do this because politics was something new to me. Questions were racing through my mind. What would I say? Would the congressman take me seriously? What if he asks me something I didn't know? But I decided to challenge myself and set up a meeting. This did take some persistence on my part, but after several emails back and forth to my local representative's office a date was finally set. Meghan coached me every step along the way. We even had a mock rehearsal meeting. The actual meeting went well. I am happy to report that Rush Holt decided to sign on as a co-sponsor of this bill. I would like to think it had something to do with my meeting. It was at that point I realized the importance of patients stories and testimonies.
While the federal government was working on The Cancer Drug Coverage Parity Act at the national level several state governments were trying to pass similar state bills. Early in January 2012 Governor Christie signed The Oral Chemo Access Bill into law in NJ. NJ joined several other states in providing equitable insurance coverage of orally-administered cancer treatments. I was asked by Gina Londino,the LLS patient services manager, to attend a press conference at the State House that would spotlight NJ's new Oral Chemo Access Act. Prior to the actual conference we were privileged to meet Senator Winberg who fought for the passage of this bill. She insisted that the patients should also speak at the conference. Once again i was hesitant, but I spoke. I thanked Governor Christie for enacting this legislation. I explained that often the only available treatment option for a patient is an oral chemotherapy. I also explained that over half of the new agents being developed to treat cancer will be oral drugs and that patients don't choose an oral agent over an IV because they don't like needles, but because it offers them the best chance at survival. Prior to the passing of this legislation a cancer patient could be responsible for thousands of dollars in monthly prescription co-pays for the rest of their lives.
Thanks to the IMF and the LLS I found my voice and learned the importance of sharing my story. Personal stories have tremendous impact. As a teacher I know that learners acquire information the best through stories. Storytelling is an ideal teaching and learning tool. Stories are powerful. I have had the privilege to attend the LLS's annual Mission Day in Washington, DC. During the LLS Mission Day patients and advocates from across the country meet with elected officials to spread the word about the need to find a cure for blood cancers and improve the lives of blood cancer patients. The most powerful tool we have in convincing legislators to support a bill are our personal stories.
I know how important it is to make my voice heard and to share my personal story and now I am encouraging others to do the same thing both for themselves and for issues related to their care. This past fall I had the opportunity to work with the patient services manager of the LLS at my local Light the Night walk. I was the Advocacy Chairperson for this event.
Since I have been diagnosed with myeloma have learned the importance of being an advocate. I am thankful for the advocates in the past that have helped get cancer related issues noticed. I appreciate everyone who has taught me things about advocacy along the way. I still have much to learn, but I am grateful that I am well enough to pay it forward.
Some Issues that I know that cancer patients will face in the upcoming year are...
Cuts in government funding to the NIH that will impact cancer research
Educating law makers about oral chemoparity both on the state and federal levels.
There are 84 new members in the house of representatives that need this education
Working with our state government to make sure cancer patients are treated equitable when the ACA of 2010 is implemented.
And workings with the FDA for accelerated approval of drugs for orphan diseases.
I am sure this list goes on and on. I am a novice in this field.
I will do may best to advocate for these issues by writing to my congressman or setting up in district meetings, spreading the word through my social media networks, providing advocacy updates at my monthly support group meetings and being an active member in the Advocacy groups that I joined.
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