# 376 Friday, October 19, 2007 - STEM CELL ACTIVISTS AND THE POWER OF FAVORS As a little girl, Speaker of the House Nancy Pelosi helped her politician father keep track of favors he had done for folks, writing them down on slips of paper and putting them into a box. That way, when something big came up and her Dad really needed help, he could go to the box, take out the slips of paper with favors done, and call Sam or Suzette- hey, I need your help! That is the power of the grass roots activists. We don’t have any money, basically, so we do favors for each otherâ€"that is the coin of the realm. (It is a little scary, thinking how many favors I owe… I could work several lifetimes and never pay everybody back!) Right now, as you know, New Jersey’s half billion dollar stem cell program is hanging in the balance (what? You didn’t know about that? Quick! Rush to (For the past three days, I have been going through my personal phonebook, sending a brief personalized email to everybody I had an email address forâ€"if you know me, and I did not contact you, that means I lost your email address, so please drop me a line-- so I can ask you more favors!) Naturally, since I can barely sneeze without asking Karen Miner where the tissue box is (we have been slogging through the advocacy trenches about a decade now) the first thing I do is ask for her help. So then Karen contacts her list of personal friends-- and they call their pals, neighbors, associates and groups, asking favors-- and that is how advocacy works. Sometimes, favors asked are impossible; other we must try to help, because who knows when we ourselves will need assistance? Madonna Long, http://bridges2hope Also, Ms. L needed a favor for an issue she was working on herself. Did we know about section 608 of SCHIP, the health insurance program, a paragaph which might deny newly paralyzed people help with their wheelchair purchase? No, I did not know about that. I support SCHIP, of course, who could be against health insurance for kids? But if there was a clause inside the bill which could negatively impact wheelchair users, I wanted to know about it. Could she tell us about it? And what was the favor she wanted? The favor was, could we contact one of Senators X,Y, and Z on the list of decision-makers- I suggested, maybe she could hunt up the names of the legislative aidesâ€"if you call and leave a message for them, or talk to them personally, that means a lot more impact--? So, she hunted around, and came up with the list of Senators involved, and their legislative aides. Again, I definitely support HR 1362, the SCHIP program for children’s health insurance. But if section 608 in any way reduces the availability of wheelchairs to people in need, that section should be stripped out of the bill. So here is some material about the issueâ€" and if you have not heard about the New Jersey situation, be sure to look at the very bottom of the article! First, an email from Ms. Long herself: “HR 3162 Next, a letter from a person in the wheelchair business. Now obviously he has a financial stake in the matter, but still he is an expert witness. “Dear Representative: You are currently considering the impact of the HR 3162 (SCHIP) on America. I know that health insurance for children is a very important issue as I am the father of two children. However, I also employ 15 people in West Central Pennsylvania. I have a medical equipment company that specializes in providing custom manual and power wheelchairs to persons with disabilities and I wanted to explain to you the impact of section 608 “Rental and Purchase of Power-Driven Wheelchairs.†Section 608 eliminates the first month purchase of power wheelchairs for people with Medicare. The consumers that I serve have a wide range of diagnoses including: ALS (Lou Gehrig’s Disease), Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, Spinal Cord Injuries, and Strokes. The power wheelchairs that these people utilize are their sole means of mobility and the current bill would deny access to many of these people as I will no longer be able to financially provide these wheelchairs on a rental basis. I have heard disheartening comments made by our legislature that these people only live three months after they receive the power wheelchairs so the Medicare system should only rent these items. I challenge you and our legislatures to insist CMS/Medicare verify this information. I have been in the medical equipment industry for the past fifteen (15) years and I say that this is false. Many of my customers utilize their wheelchairs for years and then seek replacements as they have exhausted the life of there old chairs. Removing the first month purchase option from beneficiaries does not make fiscal sense. The Medicare system will pay 5% more for the rental of a power wheelchair over thirteen (13) months. This will eliminate and add to the costs instead of the intended savings of section 608. I have also heard comments from a distinguished representative that he is tired of seeing people riding around in luxury power wheelchairs. I asked you, when you have a disability such as those I have listed, what is a luxury in your power wheelchair? Do you think that these people chose to be in a wheelchair? I have worked with many wonderful disabled people over the years and have developed lasting friendships and many of these people have constitutions that you and I could only dream of. My company is not a “mass market†wheelchair company but specializes in the needs of the disabled. Many of the companies in my industry are small companies that provide a very unique service and they will also find it difficult to rent power wheelchairs to these consumers. It will come down to a business decision for many of us. Can we afford to finance the Medicare program? I know that you have the needs of all of your constituents to consider. This bill will deal directly with the needs of children, seniors, and doctors (as it will increase their fees) however you will be neglecting many seniors and people with disabilities if you allow section 608 to remain in this bill. Therefore I implore you to remove section 608 from the SCHIP bill. I would like to thank you for your time in reviewing this important issue. You may contact me at (814) 472-5591, office, or by email at jletizia@verizon. Sincerely, John J. Letizia, ATS, CRTS President. Laurel Medical Supplies, Inc. Another provider states: “AAHomecare recommends that Congress retain the first-month purchase option for power wheelchairs. Maintaining the current policy of allowing the beneficiary to purchase the equipment in the first month will ensure appropriate beneficiary access and lower costs to both Medicare beneficiaries and the Medicare program.†Finally, here is the contact information for the Senators and their aides who are considering this. Meanwhile, back in New Jersey.... The following is an editorial I helped write, with Russ Oster and the New Jersey for Hope campaign. These are good people, fighting to advance stem cell research. Please take a minute to help preserve half a billion dollars for stem cell research in the state of New Jersey. Sincerely, Don C. Reed (and please feel free to share this email with friends of research!) NEW JERSEY’S $450 MILLION STEM CELL RESEARCH PROGRAM: YES, OR NO? 21 days from today, New Jersey voters will vote on if the state should spend forty-five million dollars a year for 10 years on stem cell research. The funding would go toward advancing medical treatments and attracting leading scientists and research companies to the state. The New Jersey for Hope political committee is a group of citizen activists, medical professionals, and elected officials who have come together for the purpose of advocating the passage of the public Stem Cell Ballot Question. Today we are asking help from all who believe in the promise of stem cell research. Support the campaign in New Jersey by contributing $21 today by visiting our website: Voting YES offers the best hope we have today for treating and curing diseases such as Alzheimer’s, Parkinson’s, diabetes, heart disease and cancer. Stem cells also hold great promise in addressing spinal cord injuries and birth defects. Scientists are making tremendous progress. We want to do everything we can to support this research. Think of elections that have been lost by a narrow marginâ€"what would we give to have a chance to change that? We don’t want to look back on New Jersey , the day after the election, and say, it might have been. We almost got half a billion for researchâ€"almost? Not good enough for so many who are depending on the treatments and cures that will come from stem cell research. There are 21 days until the vote: let us use those days. We can make sure our stem cell research supporters know what is at stake, and rouse the State to turn out and vote, this coming November 6th, and stand up for stem cells! Also, be sure to read a profoundly moving Op-Ed authored by Carl Riccio, a longtime stem cell research advocate and a hero to New Jersey residents who favor stem cell research, that ran in last Sunday's Bergen Record. In it, Carl makes a compelling argument for Voting YES on November 6th. Read Carl Riccio's Op-Ed Here If New Jersey wins, everybody wins-- cures have no boundaries. But first, the New Jersey Stem Cell Research Bond Act must pass.
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