Petitioning Change.org Itself to Be Open to Change - on my petition to usher in a new era in cancer in my wife Briggs's memory

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Change.org has an inflexible policy of only using its resources to campaign for petitions that target a specific person or organization.  The policy may be effective on a broad basis, but Change.org itself is not being open to change.

I was contacted by Change.org's "empowerment specialist" about my Petition for Briggs for Cancer Immunotherapy for All.  I lost my wife Briggs after a year of not being able to get access to an immunotherapy that had been bringing complete remissions in stage IV colorectal cancer.  The empowerment specialist said the number of celebrity endorsements had "jumped out" at him.  25 stars of film, media, and tennis have added their names, along with six eminent doctors. 

My subsequent 6-weeks-long experience with the empowerment specialist has left a deep emotional scar on me.  It was only after four weeks of requested revisions to the petition, within an overall traumatic process, that he brought up the target as an issue.  It had been there, plain as day, when he contacted me: The Cancer Industry, Cancer Organizations, and Governments.

He wanted me to add a specific person or organization despite the celebrities and doctors not having agreed to that.  I said it would be unethical of me and would violate their trust.  He persisted anyway.  I said that the people I am petitioning within these groups know who they are.  The petition as it stood threatened nobody and yet called on everyone within the cancer community to respond.  I gave the example of the CEO of a large cancer organization contacting me after an article of mine about immunotherapy was published.  The CEO called the article a powerful call to action and said he was going to speak with his relevant groups about giving immunotherapy its due in the research prioritization process.

After more emails and anguish, the empowerment specialist ultimately agreed to keeping the target as it was, saying he could see it was necessary for the systemic change I was petitioning for.  He then proceeded, after delays and weeks of my needing to make needless, effecively minor revisions, to completely rewrite the petition in his own voice, speaking for me with phrases I would never use and thoughts neither Briggs nor I'd had.  After I objected to the transgression of Briggs's and my love and tragedy and the gravity of the petition itself, he finally submitted the petition to Change.org's emails team.  They then refused to send out emails about the petition because of Change.org's inflexible policy on the target issue.

It's standard business practice to review and re-evaluate the effectiveness of company policy, including based on consultations.  Change.org recently conducted a campaign for a petition to get access to an immunotherapy for a young woman with terminal cancer.  I was told by the empowerment specialist that it was one of about 30 campaigns a year out of millions on which they lend full staff support.  But did Change.org consult with anyone within the cancer community to see if it would work before devoting so much time and effort to it? 

Through 15 months of fighting Briggs's cancer, trying to get a particular immunotherapy for her, and then the petition in her memory, I've dealt with people at all levels within the cancer community.  I told the empowerment specialist that on seeing that petition, my first thought was that it probably wouldn't succeed because it targeted a specific person at a specific pharmaceutical company.  After all the resources thrown at it and despite hundreds of thousands of signatures, access to the immunotherapy was refused.

In a recent article in the Wall Street Journal mentioning that petition, the journalist wrote, "Providing early access to experimental drugs poses a dilemma for companies and federal regulators who don't want to jeopardize patient safety or the integrity of clinical trials needed to get new drugs on the market."  Other, less obvious factors and relationships also come complexly into play.

Here I have a petition that from my experience has every chance of working, and help for it has been refused because of inflexible company policy.  It should not apply to all petitions in all areas, given that Change.org cannot possibly be familiar enough with what may or may not work in all fields.  And I've given them ample input to go by, far more than I'm relating here.  What is the point of having a specific target if it won't work, devoting considerable resources to it in vain, when in certain cases a broader one can? 

The empowerment specialist had agreed after my input to keep the target as it was.  Instead of conveying that input to the emails team and advocating on behalf of the petition and so many cancer patients' need for its success, he reversed position.  He acted in the end as if I had contacted him instead of the other way round.  In effect, he dismissed out of hand the horrific 6 weeks he'd put me through, when he could have addressed the target in his very first email.  The condescension in his final email wouldn't have been deserved if I were a petitioner asking that a new color be added to M&M's, which is how I was left to feel, let alone a petition to begin ending so much needless harm and death from cancer.

I wrote to the CEO of Change.org, Ben Rattray, and the president/COO, Jen Dulski, to lodge a formal complaint about the empowerment specialist.  I wanted to both protect other petitioners and to ask that they intercede with the emails team about the target and re-institute the campaign on behalf of my petition.  I got no response. 

I then happened to read a Mother's Day ode Jen Dulski had posted online.  Her mother had survived cancer but half her face had been left paralyzed by the operation.  My father had survived cancer, but the surgeon had severed nerves during the operation.  One side of his face collapsed and remained dropped for the rest of his life.  I thought it was an awfully unusual coincidence that her mother and my father should have suffered such a similar consequence.  Immunotherapy can eliminate the need for most cancer surgeries.

I wrote a second email to Jen alone.  I got no response to it either.  I then asked if my comments about the empowerment specialist were being looked into, and I made one final request to re-evaluate the counterintuitive inflexibility of the policy on specific targets.  Still nothing.  I can only recall once being so surprised at no response whatsoever to a letter to/about an organization.  Oddly enough, it was at the other end of the spectrum, when Briggs and I wrote to the head of nursing at a major cancer center in Manhattan to compliment twelve nurses and assitants and a volunteer who had been unusually helpful.  But even then, one follow-up note brought a response.

Jen had seemed to me in the ode I mentioned, and interviews, to be open to input.  It now appears that Change.org itself is not open to change; and when so many lives are at stake, the details of which are in my petition.  Please join me in petitioning Change.org to re-evaluate the inflexibility of its policy on specific targets and for them to actively campaign for my petition as it stands.

Many thanks for adding your name to the call,

Paul  



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