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  • Suggestion Box for LiveSTRONG Delegates

    As you might know, Scott and I will be traveling to Washington, DC in mid-May to speak to members of Congress as part of LiveSTRONG Day. Along with other delegates from the rest of the country, we will be discussing issues related to cancer survivorship, namely:
    • Potential funding cuts to federal cancer programs
    • Increased access to quality care
    • Reduced disparities in treatment


    Our job as delegates would not be complete if we didn't take input from the people we are representing. The goal of this thread is for people in the Forum to make comments and suggestions on these topics so Scott and I can relay them to lawmakers during our meetings on the Hill. We will share your thoughts with the other delegates in attendance so we can put forth a unified front fulfilling our mission.

    Please take full advantage of this opportunity. Since I hail from Massachusetts, I will likely be meeting with Senator Ted Kennedy who, in addition to being a perennial advocate for health and cancer related issues, is the Chairman of the Senate Committee on Health, Education, Labor and Pensions. This standing committee of the Senate is charged with driving, among other things, healthcare policy.

    Advocacy works, and with your help, we will be able to make an even greater impact when we take the fight to the top.

    LiveSTRONG,
    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
    11.22.06 -Dx the day before Thanksgiving
    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.


  • #2
    I would love to see AMA guidelines which would require doctors to provide a list of local facilities that could be used to secure a second opinion. Additionally I would like the AMA to develop a listing of centers of excellance for each particular type of cancer, that should also be give to the patient at the time of initial diagnioses.

    Here's part of what I would expect in a doctors office

    Doctor: Mr. Moses I'm sorry to have to inform you that in my opinion your son has cancer of the _________. Before we discuss treatment options I have a list of doctors that you can use for a second opinion, if you should want one. I also have a listing, that is complied by the AMA, of centers of excellance for the treatment of you son's _______. If you want before you leave the office the people at the front desk can make arrangements for a second opinion.

    Me: Thank you very much but what do we do now.

    Doctor: Well here are the options as I see them .................
    Last edited by dadmo; 03-27-07, 02:54 PM.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

    Comment


    • #3
      Me personally, I would like to see a discussion on health insurance coverage which would be universal instead of varying from insurance company to insurance company. I would also like to have a discussion on disability coverage. I have found, depending on the company you work for, benefits vary depending how long you work there to providing very basic coverage because of cost. It is not a person's fault if they develop cancer or suffer from any other serious illness. It becomes frustrating having to worry how you are to survive financially when you are trying to become better.

      Joann

      Comment


      • #4
        Reading

        As background, it's good for all of us in the U.S. to know about the government agencies related to cancer, including the National Cancer Institute and the Centers for Disease Control and Prevention.
        Scott, [email protected]
        right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


        Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

        Comment


        • #5
          a few thoughts

          -Encourage established national guidelines to include practice of care, by whom, at what time, for what reason and how guidelines will be disseminated for actual use.
          -Increase reimbursement to care providers for initial assessments in order to increase efficiency with accurate diagnosis, patient understanding, plan for care, positive outcome...etc.
          (When compliance hit the medical field, doctors lost the ability to order diagnositic tests outside of the listed diagnosis. Extra tests would not be reimbursed!! Bad move for dealing with unsuspecting lumps that are actually time bombs.)
          -Increase accountability for appropriate use of allocations with periodic review. DHS could work on this one.
          -Review for redundancy of care to increase efficiency of dollars spent.
          -Support care providers through IT systems with tools that provide recognition of patient history and differenctial diagnosis on initial exam screens.
          -Link initial care providers to specialists at the time of need for guidance in appropriateness of treatment, time and diagnosis related. I see something like increased available support through telephone advice centers-already available in some systems. NIH is another source. Increase allocations to support these early diagnostics. It is costly at this point in time however, (both missed diagnosis and $) because the intitial care provider is limited by time and $ restraints. Patients must be moved quickly and with minimal exam. (Just think of how much money is spent on employees helping to untangle confused and emotional patients and their families!!) Get it right the first time and everybody benefits in more than one way.
          -Limit dollar spending on costly Hollywood advertising and re-estabilish dollars to point of care where it should be.
          Will keep thinking, thanks for being there! take care, Russell's Mom, Sharon
          Last edited by Russell's Mom; 03-31-07, 09:47 PM.
          Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

          Comment


          • #6
            I didn't want to post this over at the Tony Snow thread. That has been corrupted enough. Is there an easy way to find out what bills and resolutions are in process? Of course I'm only interested in those that have an impact on cancer issues.
            Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

            Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

            Comment


            • #7
              Good resources on pending U.S. legislation include the advocacy sections of the Lance Armstrong Foundation, National Coalition for Cancer Survivorship, and American Cancer Society sites.

              There's a relevant site maintained by the National Cancer Institute, too, although at least one of the links is broken.
              Last edited by Scott; 04-03-07, 10:22 PM.
              Scott, [email protected]
              right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


              Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

              Comment


              • #8
                Thanks Scott. I shouldn't have needed to ask. No such thing as a dumb question, right?
                Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                Comment


                • #9
                  No, it's good that you did ask!
                  Scott, [email protected]
                  right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                  Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                  Comment


                  • #10
                    You can also find direct references to bills on the THOMAS website. This site belongs to the Library of Congress, and you can search bills by textual content or by sponsor. It is extremely useful, and I highly recommend it if you want to get into the nitty-gritty details of the legislation.

                    You may want to check out H.R. 1078 which is dubbed the Comprehensive Cancer Care Reform Act and H.R. 1030 which relates to Cancer Screening.
                    Last edited by Fed; 04-03-07, 10:41 PM. Reason: Added references to key bills that are in committee
                    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                    11.22.06 -Dx the day before Thanksgiving
                    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

                    Comment


                    • #11
                      Dadmo, now I'm doubly glad you asked. Thanks, Fed, I hadn't found that site. Searching for "cancer" returned 92 hits, and searching for "testicular cancer" returned four.
                      Scott, [email protected]
                      right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                      Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                      Comment


                      • #12
                        I did the same quick search you did. I have lots of reading to do. Once I get up to speed I might tweek my rep's even if I'm not at LIVESTRONG day.
                        Last edited by dadmo; 05-13-07, 04:47 AM.
                        Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                        Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                        Comment


                        • #13
                          Last chance for ideas to pitch!

                          Hey All,

                          LiveSTRONG Day is just around the corner, and Scott and I will be trekking to DC on Monday for our pow-wow with our nation's leaders on the Hill. If there are any specific ideas on cancer survivorship issues, access to care, cancer-related items for federal funding, and other related items, now is the time to send them our way.

                          If you want to take a crack at the meat of legislative issues, check out S.1056, which is a bill introduced in the Senate that is called the "National Cancer Act of 2007." To check out the details, go to the THOMAS website and search for the "bill by number" by typing S.1056. I should note that this bill is LONG, so it helps to look at the headings first.
                          "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                          11.22.06 -Dx the day before Thanksgiving
                          12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

                          Comment

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