Skip to main content

Every day we cancer survivors see news that could have an impact on cancer treatments, cost and access to health care and our rights as patients.  So its only natural for cancer survivors to become advocates in the arenas of public policy, research and cancer care delivery.

Advocacy is a hard, sometimes thankless job, but getting involved is very rewarding.  Follow me below for some tips and resources.

Ok, my apologies, but due to errors most of this diary was deleted.

In the interests of time, I'm just going to list some good resources for getting involved in cancer advocacy. Note of caution - dig for details; groups promoting a legislative agenda should provide links to actual bills, or sample legislation, or have a detailed public policy statement about priorities.

Legislative Advocacy

National Breast Cancer Coalition - the best and most influential cancer survivor advocacy group in the U.S.  They are cancer survivors working to educate other cancer survivors to advance a substantive agenda.  They've even set a Deadline of January 1, 2020.  Lots of tools, stats, training, and policy analysis at their web site. Take advantage of it, even if you're not a breast cancer survivor.  Their agenda usually impacts other cancers as well.

American Cancer Society Advocates on behalf of all cancers.  Not a strong or heavily patient-centered agenda.  It focuses on generic increases in cancer research funding, promoting cancer screening and funding of smoking cessation programs.    Anyone interested in working with them should seriously consider pushing them to promote a stronger agenda.

LiveStrong  Lance Armstrong's group is actually pretty good, though they've been less visible in recent years.  They focus on issues related to survivorship.

Breast Cancer Action Their agenda complements NBCC's.  Their primary advocacy focus is on issues related to environmental toxins.  They do good work, too, are very vocal.

Living Beyond Breast Cancer

Young Survival Coalition

Feel free to add others you've discovered....

Get involved, attend conferences and sign up for a local grassroots network.  Call your members of Congress, the White House, and sign petitions!

Plan to spend at least a couple of hours a week on sending emails, going to events, making calls, etc.  It really is important.

Sorry for the delay in losing the first diary. I'm such a klutz.  I'll answer questions in the comments below and will post my Research Advocacy diary tomorrow.

Update: I've added some links for research advocacy in the comments below

EMAIL TO A FRIEND X
Your Email has been sent.
You must add at least one tag to this diary before publishing it.

Add keywords that describe this diary. Separate multiple keywords with commas.
Tagging tips - Search For Tags - Browse For Tags

?

More Tagging tips:

A tag is a way to search for this diary. If someone is searching for "Barack Obama," is this a diary they'd be trying to find?

Use a person's full name, without any title. Senator Obama may become President Obama, and Michelle Obama might run for office.

If your diary covers an election or elected official, use election tags, which are generally the state abbreviation followed by the office. CA-01 is the first district House seat. CA-Sen covers both senate races. NY-GOV covers the New York governor's race.

Tags do not compound: that is, "education reform" is a completely different tag from "education". A tag like "reform" alone is probably not meaningful.

Consider if one or more of these tags fits your diary: Civil Rights, Community, Congress, Culture, Economy, Education, Elections, Energy, Environment, Health Care, International, Labor, Law, Media, Meta, National Security, Science, Transportation, or White House. If your diary is specific to a state, consider adding the state (California, Texas, etc). Keep in mind, though, that there are many wonderful and important diaries that don't fit in any of these tags. Don't worry if yours doesn't.

You can add a private note to this diary when hotlisting it:
Are you sure you want to remove this diary from your hotlist?
Are you sure you want to remove your recommendation? You can only recommend a diary once, so you will not be able to re-recommend it afterwards.
Rescue this diary, and add a note:
Are you sure you want to remove this diary from Rescue?
Choose where to republish this diary. The diary will be added to the queue for that group. Publish it from the queue to make it appear.

You must be a member of a group to use this feature.

Add a quick update to your diary without changing the diary itself:
Are you sure you want to remove this diary?
(The diary will be removed from the site and returned to your drafts for further editing.)
(The diary will be removed.)
Are you sure you want to save these changes to the published diary?

Comment Preferences

  •  Tip Jar (12+ / 0-)

    "We must not confuse dissent with disloyalty." Edward R. Murrow

    by Betty Pinson on Mon Jul 23, 2012 at 05:49:12 PM PDT

  •  Look at legislative advocacy info in the links (8+ / 0-)

    Take a gander at what the various groups are doing and let me know which ones you like or what you would prefer to see.

    "We must not confuse dissent with disloyalty." Edward R. Murrow

    by Betty Pinson on Mon Jul 23, 2012 at 05:51:03 PM PDT

  •  Research Advocacy (6+ / 0-)

    Now that I have the diary up, I'm going to add info about Research Advocacy in this comment.

    Thousands of cancer survivors participate every year on panels, advisory boards, peer review committees, etc. to help advance research, evaluate treatments, analyze population data and trends, etc.  

    If you think you have an interest in this area,  there are some places you can contact to get involved.  Many of these programs provide training to help you learn to evaluate scientific proposals, interpret data and understand clinical trial design.

    Dept. of Defense This link gives information about participating in the CDMRP Breast Cancer Consumer Advocacy Program, but DoD has similar programs for their other cancer research programs.  You'll find them at the same web site.

    National Cancer Institute's Consumer Advocate Program

    Food & Drug Administration

    Cochrane Collaboration

    If you apply and are accepted to these programs, most programs will cover your costs for travel and lodging to attend meetings and conferences.  

    "We must not confuse dissent with disloyalty." Edward R. Murrow

    by Betty Pinson on Mon Jul 23, 2012 at 06:14:03 PM PDT

  •  Recently someone asked me what I thought (4+ / 0-)

    they could do to advocate for cancer (you know not cancer but a cure for cancer, better treatment etc.) I said I thought advocating for a national health care system would be the best.

    I'm  not familiar with all the groups you listed but my concern is that so many really don't want a cure for cancer in the US. There is just too much money to be made treating cancer.

    I recently participated in a French study on cancer. That was fun and I got paid. France is a bit ahead of the US on cancer treatment so I was glad to help out.

    Frankly, many other countries are ahead of us on treating cancer and most of them have some sort of national health care.

    So again it seems like advocating for this would help take the profit out of treatment and focus it more on a cure or prevention.

    Tracy B Ann - technically that is my signature.

    by ZenTrainer on Mon Jul 23, 2012 at 06:26:36 PM PDT

    •  Advocating for the ACA (5+ / 0-)

      is probably the best way to work towards ensuring quality cancer care in the U.S.   A lot of patients die due to lack of insurance or subpar cancer treatment.

      Fortunately, there were a lot of cancer advocates who worked on health care reform for years and who participated in many of the panels, hearings, discussion groups, etc.  when the ACA was developed.   So a lot of good changes for quality cancer care have already been incorporated in the current law.  

      Here's a good example:

      Affordable Care Act May Hurt Medical Research

      The CEO of one of the top medical centers in the US is complaining because ACA guidelines will tie payments to providers according to the effectiveness of the treatments and medical equipment they use.  That means, if drug companies and docs insist on giving patients expensive treatments that are no better than existing ones or are not effective, they won't get reimbursed at the same level.

      Some drug companies today have gotten lazy and push development of drugs that are inferior or ineffective, selling them at ridiculous prices.  This new regulation in ACA will push them to spend money developing new effective treatments instead of recycling old stuff as new "cures".

      "We must not confuse dissent with disloyalty." Edward R. Murrow

      by Betty Pinson on Mon Jul 23, 2012 at 06:41:53 PM PDT

      [ Parent ]

    •  Agreed (3+ / 0-)

      I want to see the fat profit margins go the way of the dodo.

  •  My interest.. (4+ / 0-)

    ...is in breaking the pharmaceutical, oncologist, R&D "partnership."

    And what I mean is that the cancer business is very lucrative employing a great many people.

    So my question is are we really going about treating/curing cancer in the right fashion????

    I do not necessarily subscribe to the idea that the fix is always throwing money at the problem, but maybe we need to view the problem from a different angle with a fresh set of eyes.

    What if a solution existed outside of surgery, chemo and rad?

    Are you aware of any non traditional approaches to solving the cancer riddle that are not based on enriching cancer workers/companies?

    It seems to me that looking at alternative cures/treatments aren't in the interest of pharma, oncologists or R&D workers.

    Not suggesting some kind of conspiracy rather I think those tasked with solving cancer do not consider other ways because they have too rigid/narrow a focus on how the problem should be fixed.  And this comes from years of training and work experience.

    Imagine if some form of meditation would be able to cure all illness - well medical business is then in a lot of trouble.  Or perhaps some new type of light or sound based tech.

    I think we need to better explore the power of the human mind and it's ability to cure all ailments.

    As per Livestrong - I found it to be about profit not cancer patients.  For example, a cancer patient would describe an issue in a thread and the next post would be "hey read my book" or "hey check out my new clinical trial."

    •  The federal government does fund research (5+ / 0-)

      into alternative treatments, primarily through the National Institutes of Health.  They've done studies on all kinds of complementary treatments,  like meditation, reiki, spiritualism, vitamin therapies, etc.    Of course, like any other federally funded research group, they have to compete for funding and they have to meet the same rigorous standards for scientific evaluation.

      Here's a link to NIH's National Center for Complementary and Alternative Medicine.

      "We must not confuse dissent with disloyalty." Edward R. Murrow

      by Betty Pinson on Mon Jul 23, 2012 at 06:47:47 PM PDT

      [ Parent ]

      •  Here's a good example (5+ / 0-)

        of integrating CAM into health care practice, from our local paper

        Link

        "We must not confuse dissent with disloyalty." Edward R. Murrow

        by Betty Pinson on Mon Jul 23, 2012 at 06:50:26 PM PDT

        [ Parent ]

        •  Thx (3+ / 0-)

          Very nice article and I think I will look into this.  I have two vertebrae fused with screws so I take ibuprofen twice a day and sometimes acetaminophen and I would rather take none.

          I get worried that too much of either isn't good.

          •  Have you looked into DMSO for pain? (2+ / 0-)
            Recommended by:
            bcdelta, ZenTrainer

            That's another treatment that has been squashed by the PTB.  It's used extensively by vets and trainers on horses, and athletes use it all the time too.  Supposed to be safer than aspirin, let alone ibuprofen.

            •  No (2+ / 0-)
              Recommended by:
              ZenTrainer, Carol in San Antonio

              Never heard of that.  Is this something one can buy in a store?

              •  Working on DMSO info response (2+ / 0-)
                Recommended by:
                bcdelta, ZenTrainer

                please check back, bcdelta - I will post some links and quotes regarding use, safety, efficacy of Dimethylsulfoxide (DMSO).  

              •  DMSO info (2+ / 0-)
                Recommended by:
                bcdelta, ZenTrainer

                Dimethyl sulfoxide (DMSO) is a natural solvent which is a byproduct of the wood industry.  It absorbs easily into the skin, has pain relieving and anti-inflammatory properties, and seems to go straight to cancer cells in the body.  I first thought of it for you for a pain-reliever, but you might want to explore its use as a transporter of anti-cancer agents straight into your tumor.

                Here's a good overview:  DMSO:  Many Uses, Much Controversy

                DMSO perhaps has been used most widely as a topical analgesic, in a 70 percent DMSO, 30 percent water solution. Laboratory studies suggest that DMSO cuts pain by blocking peripheral nerve C fibers.3 Several clinical trials have demonstrated its effectiveness,4,5 although in one trial, no benefit was found.6 Burns, cuts, and sprains have been treated with DMSO. Relief is reported to be almost immediate, lasting up to 6 hours. A number of sports teams and Olympic athletes have used DMSO, although some have since moved on to other treatment modalities. When administration ceases, so do the effects of the drug.
                DMSO has long been used to promote healing. People who have it on hand often use it for minor cuts and burns and report that recovery is speedy. Several studies have documented DMSO use with soft tissue damage, local tissue death, skin ulcers, and burns.18-21
                The Cancer Tutor website is a very thorough compendium of natural cancer treatments, and uses DMSO in several of their protocols.  

                The Independent Cancer Research Foundation is another useful site.  If you scroll all the way down their intro page, you will find links to their various natural cancer treatment protocols, one of which is their DMSO-Chlorine Dioxide Protocol.

                The safety issues are related to its effectiveness as a solvent, in that it will transport anything it contacts through the skin and throughout the body, so you want to apply it with clean hands and not with latex gloves.   Also, it will amplify the effects of any other drugs you are taking, so I wouldn't consume alcohol or any other recreational drugs with it.  Also, strongly not recommended for pregnant women, because it is so attracted to undifferentiated cells, which I guess fetuses are full of.    AND some people report body odor issues when using DMSO.

                EarthClinic's (folk remedies and holistic cures) DMSO page has lots of anecdotal reports from people who have used it:

                DMSO, or dimethyl sulfoxide has been used for many years by athletes to treat painful muscles and joints. DMSO builds up the white blood cells and increases immune production of migration inhibitory factors (MIF) of macrophages.

                A few of DMSO's Reported Therapeutic Properties:
                stimulates the healing of wounds
                anti-inflammatory
                anti bacterial, fungal and viral
                softens collagen
                is a scavenger of the hydroxyl free radical
                stimulates the immune system
                a potent diuretic
                increases interferon formation
                reduces the # of platelet thrombi

                DMSO:  Nature's Healer by Dr. Morton Walker is the only book I have on DMSO, although there is a good chapter on it in Politics in Healing by Daniel Haley.

                DMSO is not available in health food shops, but is available through veterinarian suppliers and also online.  I got mine here.  It is approved by the FDA for interstitial cystitis.  

                I hope this info is useful to you, bcdelta.

                •  thx (2+ / 0-)
                  Recommended by:
                  Carol in San Antonio, ZenTrainer

                  Carol I appreciate your taking the time to right this.  Definitely will look into it.

                  •  sorry (2+ / 0-)
                    Recommended by:
                    Carol in San Antonio, ZenTrainer

                    meant write - just brewed coffee.  LOL

                  •  You are so welcome! (2+ / 0-)
                    Recommended by:
                    bcdelta, ZenTrainer

                    bcdelta, I seem to recall reading that DMSO is particularly useful for protecting normal cells from radiation damage...  if you like, I will look that up and post info on it also.

                    I'm a little leery of posting natural/non-allopathic info because many people just don't want to hear it.  But I really support people using any modality they want, and many people combine alternative treatments with allopathic ones.

                    DMSO has been used in other countries in combination with very low-dose chemotherapy agents, much as insulin-potentiated treatments do (both insulin and DMSO as well as glucose are taken up by cancer cells much more readily than normal cells - I guess cancer is super hungry... which explains cachexia).  So the chemo kills the cancer and not the patient, which is good.

                    best wishes, please let me know if you want any more info.

                    •  Post Away (2+ / 0-)
                      Recommended by:
                      Carol in San Antonio, ZenTrainer

                      I never had radiation though, but having not something well understood I'm open to non traditional medicine.

                      And I would add an air of caution to this meaning if one has a well understood cancer with effective treatment then I would be careful about gambling with going 100% alternative.

                      In absence of this though - what do you have to lose?  The medical community is right to have controls on treatments to prevent quacks from selling snake oil, but at the same time I think they're protecting their market share knowingly and unknowingly.

                      To the extent that both Shari and I had an early diagnosis to our cancers via alt medicine then it's not total hogwash so I think worth further examination.

                      I watched a video last night on past life regression and while many would laugh me out of the room on this - would it really hurt me to spend $100 and see if it does anything?

                      So I'm not against Western medicine and think it should be used in conjunction with alternatives, but think western medicine can be improved a lot and I think competition keeps em honest.

                      •  Absolutely, agree with your comments (1+ / 0-)
                        Recommended by:
                        peregrine kate

                        I wrote to peregrine kate about hosting a future MNCC open thread with a possible conversation-starter question "What alternative healing modalities have you used in your healing journey?"  I know from reading here for awhile that many of our group have added various treatments (TCM, yoga, Tai Chi, diet, vitamins and herbs) along with their allopathic regimen.  So I'll save the info on using DMSO to mitigate the harmful effects of radiation and chemotherapy treatments for later, when people who opt for radiation and chemo can see it and might benefit from it.

                        I would never question anyone's choices on this journey - no one's situation is the same, and so many factors go into our decisions.  I value so much the open acceptance and safe atmosphere of our MNCC.  I only recommended DMSO to you based on your analysis of the success odds of the surgery you were offered (I have an inoperable tumor myself).

                        On the past life stuff:  why not?  I think cancer presents us with not only an opportunity but an imperative to open our hearts and minds to all kinds of previously unthinkable things.  

                        Thanks for the conversation, bcdelta!  

                    •  Chemo (2+ / 0-)
                      Recommended by:
                      Carol in San Antonio, ZenTrainer

                      My mom has been on and off chemo for 2 years and I think it is killing her so I'm not 100% sold on chemo for all cancer.

                      What I found interesting though is she takes a pill from Merck called Emend.

                      Emend greatly reduces nausea post chemo and one needs to take 3 per chemo treatment to the tune of $150 per pill.

                      What emend does not do is enhancing appetite.  So treating symptoms with yet another patented drug.

                      Marijuana on the other hand gets rid of sickness and enhances appetite and one wouldn't spend $450 per chemo session.  Problem (for pharma) is one can't patent this.

      •  Thanks (4+ / 0-)

        The bit on Reki is funny as I tried it out in 98 and the lady doing the healing asked me if I had injured my back and I said no.

        Then 12 years later I was diagnosed with a tumor exactly where the Reki lady said I was injured.  On top of this it's an extremely slow growing cancer and the doctors said it probably had been growing for 15 years.

        I think NIH does do a lot of good things, but when you look at the lobbying from moneyed cancer interests how seriously do you think NIH funds alternatives?

        And in this regard perhaps it's a bit like oil and energy.  Two bad oil spikes and stagflation in the 70s so DOE is started to get us off oil.

        35 years later we're still addicted to oil and while DOE, DARPA, etc. have developed a lot of cool alt energy tech it really still isn't mainstream and I think because of lobbying from entrenched energy players.

        So I think it's a start that NIH funds alt cures, but I'm skeptical of whether there's a real desire to make headway or if it's not just some kind of window dressing.

  •  Betty, the one point to make about cancer, (6+ / 0-)

    and supporting cancer research efforts,  is to emphasize that the only real cure for cancer is early detection,  and THAT'S where the research money should be going,  and not towards so-called "cures" for cancer.

    Yes,  it is very sexy to "save" someone who has teh disease,  but actually dealing with the root causes of cancer involve threatening too many economic interests that benefit from the chemicals used to produce modern day living.  Most of these  (chemicals)  address the convenience of merchants, rather than any real needs.

    don't always believe what you think

    by claude on Mon Jul 23, 2012 at 08:24:33 PM PDT

    •  I think you're saying two different things, (5+ / 0-)

      actually.
      Yes, I believe that the environmental toxins that we "swim" in now (air, water, food) are underexamined as carcinogens. The increases in certain types of cancer--especially estrogen-dependent ones--point strongly to environmental contributors/triggers. Shutting down that pipeline would be very helpful.
      However, I'm not as convinced that early detection is as much of a holy grail as one would hope. Until we have better (i.e. less harsh, less comprehensive) treatments, it's not clear to me that knowing early is enough.
      In some areas--and I think that uterine cancer, the kind that I have, is one--the overall survival rates have not been increasing in the past few years, despite some modest advances in treatment. Most of these cancers are indeed discovered comparatively early, still, but the docs are not gaining much ground.

    •  Some Thoughts (6+ / 0-)

      I still think we need to break the pharma/oncologist oligopoly.  Then look at diabetes.

      If you had cures for both then one would save a ton of money and this would go a long way to financing other medical care so that all have access to the same treatment.

      Next why not do both cures and early detection.  In that if a person never has to have surgery, chemo, rad, insulin/dialysis then such people suffer a lot less.  And I think we need to strive to make sure that we have a heavy focus on minimizing suffering.

      Finally, I had a chordoma and early detection doesn't matter.

      Chordoma is a rare form of bone cancer and only 300 people are diagnosed with it per year in the US or 1 in a million.

      It grows anywhere from the sacrum to the base of the skull and I had mine in my lumbar spine. - inside and outside the spinal canal so to access it they had to cut off one or two pedicles and they broke two of my vertebrae, which are now fused.

      This operation took one year to recover from so I would like to see others not have to go through so much pain in the future.

      At any rate, it starts out as a tumor and people notice it via pain, blurred vision, etc.

      So it grows very slowly until removed then the tumor spills cells and can regrow in the same area as a new tumor or can spread to other organs.

      So regardless of early or late detection one still has the cells spill upon removal.

      And because it's next to the spinal cord one cannot just remove the tumor entirely by cutting out everything around it.

      There is no chemo for this- the oncologist was honest - he said it's too rare for a pharma company to spend money to develop a drug.  The treatment is surgery and then proton beam radiation.  The proton beam enables rad to go to a very specific area in a higher dose - again one can't just nuke the spinal cord.

      So some people survive and others die and it's unclear why.

      Early detection and drugs that treat symptoms don't really help those with chordomas so I prefer looking for cures.

    •  cancer requires a multifocal approach (6+ / 0-)

      detection is important and vital, agreed.

      coming up with better treatment is important as well.

      in my case, early detection would have been somewhat helpful, maybe to limit the growth, but still there is no cure except for the big gun: stem cell transplant, which brings its own set of problems for some, such as gvhd.

      so i would argue another necessity is basic biological research. without more information about cancer, how it occurs, how it transforms, especially since in my case, there is a lot of wtf. no one knows why the treatment of nitrogen mustard seems to keep it bay sometimes for instance. no one knows why lymphomatoid papulosis appears histologically malignant yet it is essentially self-limiting and goes away, most of the time. no one knows why some people get transformation of their mild lymphoma into an agressive one.

    •  My choices (5+ / 0-)

      claude:

      I had my tumor removed, but they thought it was a benign nerve sheath tumor and then when they did the pathology they discovered it was a chordoma.

      I'm on medicaid and had to go out of state.  So I tried to get radiation, but they didn't like the reimbursement so 6 months after surgery one hospital out of state agreed to it and they had ignored me before and another had cancelled treatment the night before it was to start.

      So now they wanted to do an even bigger surgery and then rad.

      The bigger surgery was removing my entire L2 vertebrae and fusing 5 vertebrae.  They were going to go in through the back and the side.  So I think more than a year to recover from.

      Then I did some research and found a study done my Nagoya University in Japan on the exact same operation.

      Guess what?  1/3 success rate meaning 2/3 died within 5 years.

      So I decided no operation for now.  If I have a short time I wish to have a functioning back - not an easy decision to make.

      So based on my cancer I would like to see a focus on cures.

    •  I'm confused by this Claude. To me early (5+ / 0-)

      detection and prevention are 2 different things. Perhaps we need to focus on the cause of cancer so that we can prevent it.

      My breast cancer was detected very early (by me) and "treated" very early. I had 2 surgeries and passed on the suggested "standard of care" treatment; chemo, radiation and a dangerous drug to be taken for 5 years.

      So I don't see how early detection helped me so well except maybe that I should be grateful to be alive?

      Knowing the cause and having a cure would be so much more helpful and way less scary than early detection.

      Tracy B Ann - technically that is my signature.

      by ZenTrainer on Mon Jul 23, 2012 at 09:20:02 PM PDT

      [ Parent ]

    •  late for me, and I'm inebriated, so... (5+ / 0-)

      I can't refute anyone's points.  

      My own partner survived due to a very sharp tech who saw something very early, so I am pre-disposed towards early detection.  

      It is certainly not a simple topic and one size cannot fit all,  but I happen to be very much in the camp of environmental causes, mainly the constant bath of chemicals we are all exposed to by simply living here in this modern life.

      But I have no doubt that there are many other reasons cancers occur.

      I wish to all nothing but success in your struggles against this monster.

      don't always believe what you think

      by claude on Mon Jul 23, 2012 at 09:32:00 PM PDT

      [ Parent ]

    •  On Lobbying (2+ / 0-)
      Recommended by:
      Carol in San Antonio, ZenTrainer

      claude - I am not naive about what it means to take on an entrenched and well funded medical player like pharma, but when I look around our country it's not working.

      Wall Street, oil, pharma/suing/insurance, war, etc.

      And the large players get what they want via lobbying.

      I come out of the tech business, which is extremely competitive.  Even giants like Microsoft and Google can fall apart if they don't pay attention.  Look at how badly Apple was doing before Jobs came back.

      The point is the competition keeps tech companies honest and the consumer keeps getting faster tech at a lower price.

      The consumer wins.

      How about the patient winning?  I think if the current medical system has competition from eastern medicine, alt whatever then not only is this competition, but big pharma/doctors would now be forced to come up with better solutions that are less invasive/toxic.

      If one looks at the debt, pollution/cost of energy, war and perhaps more, out of control gamblers on Wall Street pushing the global economy to the edge - I know it won't be easy to change, but do we have any choice?

      I think to not act is to see collapse and this is not a political comment rather I think logical.

      Take oil - it pollutes and results in $700 billion or so leaving the US every year, but it also is a great way to build consensus for war.

      If one could just get off oil with an alt domestic source  that is produced cleanly then we greatly lessen pollution, put a lot of money back into our economy and see less war/global instability.

      I think we can get there by using the internet to organize, help block bad legislation and promote the right legislation.

  •  Betty (3+ / 0-)

    what do you think of NORD? National Organization for Rare Diseases.
    I join in their advocacy efforts since i have, as far as I know, two rare diseases. I got this recently.

    July 9, 2012, Washington DC----The FDA Safety and Innovation Act, signed by President Obama today, contains the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983, the National Organization for Rare Disorders (NORD) said.

    NORD President and CEO Peter L. Saltonstall said he was pleased that NORD was able to provide successful leadership in developing the legislation with the FDA and in guiding its enactment by the Congress.

    "We at NORD set very high goals when the legislative process began a few years ago, and I am delighted that the legislation includes provisions that will advance patient access to safe and effective therapies," Saltonstall said.

    "This legislation represents true progress for people with rare diseases, who often struggle to access treatments for their disorders," Saltonstall said.  "Our heritage, understanding, leadership and commitment to the community uniquely positioned us to identify and articulate the needs of people with rare diseases.

    "Today's signing adds to NORD's 30-year history of driving landmark legislation, which would not have been possible without the sustained efforts of our members and policy partners."

    Established in 1983 by patient advocates who successfully advocated for the Orphan Drug Act, NORD has played a central role in the development of the legislation signed by President Obama today since 2010.  The Act renews user fees to support the FDA over the next five years to fund a share of the agency's review of drugs and medical devices.

    Specific to the rare disease community, the Act provides the following:
    accelerated patient access to new medical treatments
    the development of Humanitarian Use Devices (medical devices for small patient populations)
    accelerated development of "breakthrough therapies" -- those that show early promise
    enhanced FDA consultation with rare disease medical experts
    a rare pediatric disease priority review voucher incentive program
    resolution of conflict-of-interest issues that kept voices of rare disease medical experts from being heard

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site