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Insult to Injury

Victims and researchers worry New York state budget crunch will derail progress on spinal cord injuries

by Elizabeth Knapp on January 28, 2010

Last week, victims and researchers of spinal cord injuries in New York state faced the prospect that more than 10 years of discoveries toward a cure may have been futile. According to Gov. David Paterson’s budget proposal, the Spinal Cord Injury Research Fund is being “phased out,” along with many other public heath programs, in an attempt to reclaim $14.5 million.

The fund was created in 1998 with the advocacy of Albany resident and former State Trooper Paul Richter, who was shot in the leg, arm, and neck while on duty in 1973. The near-fatal shot to the neck—though leaving him paralyzed for six months—motivated Richter to fight for a cure.

Although his injury forced him to retire at the age of 36, Richter still believes he is lucky to have regained the ability to walk with a cane. As chapter coordinator of the New York Spinal Cord Society, he became active helping others with spinal cord injuries, eventually organizing a grassroots campaign to get legislation passed in New York that specifically funds a Spinal Cord Injury Research Board. Funding is administered through the New York State Health Department and provided by a small surcharge on moving violations, since the majority of SCIs are caused by motor vehicle accidents. This can add up to about $8.5 million annually.

“These injuries are just so devastating,” said Richter, who proudly displays a photograph of himself and late actor and activist Christopher Reeve watching Gov. George Pataki as he signs the Paul Richter bill into law on July 14, 1998. “And this bill was a wonderful thing.”

New York’s SCIRB was the first of its kind in the country. After its creation, other states followed suit. The extensive research funded by this program is intended to benefit patients of various nervous system disorders.

“We sparked a very intensive and focused research effort on the problem of damaged spinal neurons,” said legal consultant and friend of Richter’s, Terry O’Neill. “And everything that we learned from focusing on that single problem has all kinds of implications for brain injury, multiple sclerosis, all kinds of diseases and injuries to the nervous system.”

Since it has been introduced into law, the fund has given over $54 million to various research programs in the state, and many discoveries have been made “that will eventually lead to a cure,” said Richter. “After so many years, it’s really obscene that they’re even considering terminating this program,” he said. “It’s disgraceful.”

The SCIRB currently has 49 ongoing projects that it hopes to be able to complete. “To terminate it now would be so awful,” said Dr. Sally Temple, scientific director of the New York Neural Stem Cell Institute in Rensselaer. “There are so many of us with promising lines of research that would just be left without completion.” Temple works for an independent non-profit institute focused on nervous system therapies using stem cells. They have been funded for about eight years and have had “really exciting results,” according to Temple, including approving a drug for multiple sclerosis, as a result of studying stem cells in the spinal cord. Temple was awarded the MacArthur “genius” award in 2008 for her work with stem cells, showing great potential for future discoveries.

Upon receiving the notice of termination from the New York State Health Commission, Richter and his supporters are ready to fight for their cause.

“We are launching an effort to get together all the people that helped us put this program together in the first place,” said O’Neill. “Our intent was a long-term investment in something that was going to pay off handsomely in terms of helping people with injuries and developing this cutting-edge high-tech industry here in New York.”

Those who hope for the continuation of this program claim that it should not significantly affect the budget, since it is generated by the surcharges on traffic fines. Furthermore, the community believes that this program would benefit the economy with the creation of jobs for researchers and scientists, as well as reducing the cost of assisting those with spinal cord injuries.

“There are thousands of people living in the state with spinal cord injuries, and the cost to society to maintain those people through social-service medical help is enormous,” said Richter. “So if we could solve that problem, it would actually save taxpayers money in the long run.”

There are cuts made in every other sector of the budget. “There are a lot of worthy programs,” said Jessica Bassett, spokesperson for the budget division. “But the unfortunate reality of closing a $7.4 billion deficit is that we’re not able to fund these programs.” Bassett said the amount that was appropriated for the spinal cord injury fund will return to the general fund this year.

Richter and his supporters plan to voice their opinion in a public hearing in front of the finance committee.

“This termination could really set back spinal cord injury research significantly, said Richter. “In the last 10 years, we’ve created a wonderful foundation we hope to build on for future research.”

Temple, who recognizes Richter as “a great hero,” hopes to continue in this effort for the sake of everyone belonging to the spinal-cord-injury community.

“We’re all just devastated,” she said.