Joe Fremante is not someone you feel sorry for. He’s too self-possessed to be pitied.

In his early 40’s now, the Guilderland resident has endured the relentless progress of multiple sclerosis since his young adulthood. The disease of the central nervous system gradually destroys parts of the brain or spinal cord, causing progressively weaker muscles and loss of coordination.

Fremante’s two teenage kids take care of him. The Sunday morning we visited, their day started early, at 2 a.m., with a thud. Fremante’s kids had to pick him up off the floor and get him back on the power chair where he spends 24 hours a day. They also washed his hair that day and shaved him. They cooked his food, cut it up, and fed him.
When Fremante, a self-described "tough guy" was in his twenties, he was unable to run long distances. In 1990, at age 26, just after his first child was born, he was diagnosed with MS.

He was able to walk until 1999, when he started using crutches. He began using a scooter in 2001. In 2003, he had a pump put in his spinal cord to help relax his muscles.
"I couldn’t get in the car after that," he said. "My ability to walk diminished. Now my legs don’t do anything."
Fremante says, in a matter-of-fact tone, "Two years ago, the hands and arms started giving out."
Asked if he has any hope of medical advances helping him, Fremante replies, "Not for people like me...The only hope is embryonic cell research." He said of treatment to be developed from the research, "I just sit and wait for that day to come."

The wait for Joe Fremante, and millions of other Americans with debilitating and life-threatening diseases, has been made much longer by federal restrictions on funding for research with embryonic stem cells and, in some states, prohibitions on the research itself.

More than 100 million Americans and over two billion people around the world suffer from diseases that may eventually be treated, or even cured, with stem cells.

Stem cells, according to the National Institutes of Health, are different than other cells because they are unspecialized cells that renew themselves for long periods through cell division; they can be induced to become cells with special functions such as the beating cells of the heart muscle or the insulin-producing cells of the pancreas.

Research on adult stem cells began about 40 years ago as scientists worked with bone marrow stem cells. The primary roles of adult stem cells in living organisms are to repair and maintain the tissue in which they are found. Adult stem cells are difficult to remove, limited in quantity and in usefulness; they can be used to produce only a few of the 220 types of cells in the human body.

Adult stem cells, the blood-forming stem cells in bone marrow, are the only kind of stem cell now commonly used to treat human diseases, such as leukemia, lymphoma, and inherited blood disorders.

Scientists began working with embryonic cells from mice more than 20 years ago and, in 1998, learned how to isolate stem cells from human embryos and grow the cells in a laboratory. Embryonic stem cells can become all cell types of the body because they are pluripotent. Large numbers can be grown fairly easily in culture, while adult stem cells are rare in mature tissues and methods for expanding their numbers in cell culture have not been established.

Embryonic stem cells for research usually come from surplus frozen embryos left over from in-vitro fertilization procedures. (Couples who can’t conceive naturally have the woman’s eggs harvested and fertilized outside the womb, then implanted. Many extra embryos are created in the process.)

Hundreds of thousands of surplus embryos are currently in storage in this country; most of them will be discarded. Couples had the choice of donating the unused embryos to research. Stem cells are taken from embryos that are several days old.

While other countries around the world — such as Britain, Japan, France, and Australia — are supporting embryonic stem-cell research, it was initially halted in the United States by President George W. Bush.

A number of polls in recent years have consistently shown that the majority of Americans — ranging from three-to-one to two-to-one, depending on how the question is asked — support embryonic stem-cell research.

On Aug. 9, 2001, Bush allowed research to resume but restricted research to 72 existing lines of stem cells. Many of these lines now have limited usefulness because of DNA damage.

The President decreed that federal funds could be awarded for research only if three criteria were met — the derivation process, which begins with the destruction of the embryo, had be initiated prior to 9 p.m. EDT on Aug. 9, 2001; the stem cells had to be derived from an embryo created for reproductive purposes that was no longer needed; and informed consent must have been obtained for the donation of the embryo, without financial inducement.

If there is concern about the morality of using an embryo for research, we fail to see how this concern would only apply after the stroke of nine on Aug. 9, 2001. We also fail to see why the destruction of thousands of these embryos — they are routinely incinerated or flushed down drains at fertility clinics — is acceptable while the use of them to further research that could alleviate suffering and save lives is not.

Despite the traditional Republican alliance with right-to-life advocates, members of both parties have spoken out against the ban. Even Nancy Reagan, whose husband suffered from Alzheimer’s, one of the diseases that might be helped by stem-cell research, came out publicly in 2004 in opposition to Bush’s ban.

The good sense of the American public prevailed enough that the House and later the Senate — by a vote of 63 to 37 — passed a bill to relax the President’s ban on federal funding for embryonic stem cell research.

This summer, on July 19, the day after the Senate passed the stem cell bill, the President vetoed it, the first veto of his term. A two-thirds majority in each house is needed to override a veto, so the issue is important in next week’s election.

We need to try again. We hope Congress will reflect the view of the majority of Americans. Each of us knows someone who suffers from a disease that could one day be helped by embryonic stem-cell research. It would be naive to believe there will be instant cures. Much work is needed.

Scores of respected medical and scientific societies, including the National MS Society and the American Medical Association, oppose regulations that limit full exploration of all human cell types that might further the development of treatments.

While the exploration of stem cells for MS therapy is in its infancy, the society says, the field has received an encouraging boost from a research team in Italy. Mice recovered from an MS model disease when they were injected with adult mouse neural stem cells. The cells migrated from the bloodstream into the brain and honed in on the many damaged areas. There, they generated mature myelin-making cells, which began to function. The mice regained their former ability to move normally.

Mice aren’t humans, of course. There are many hurdles to overcome and the United States should be at the front of the pack, not hindered by lack of new cell lines and lack of federal funding.

As the National Institutes of Health, which is responsible for instituting the President’s policy, says: As scientists learn more about stem cells, it may become possible to use the cells not just in cell-based therapies but also for screening new drugs and toxins and understanding birth defects.

One of the virtues of human nature is our ability to help those in need. We must have federal and state support for ground-breaking research that could cure devastating diseases. That is the best way to show our reverence for the sanctity of human life.

— Melissa Hale-Spencer, editor