Nothing Is Impossible (9 page)

The new policy received decidedly mixed reviews. The far right chastised Bush for permitting any embryonic stem cell research, even using embryos that had already been destroyed. Conservatives generally agreed that Bush had given scientists plenty to work with and
were reluctantly amenable, as long as there would be no more government-sanctioned destruction of “life.” The consensus among both Democratic and Republican moderates was that the president had opened a door; the question was, had he opened it too much or not far enough? Many scientists were far more skeptical, especially when additional details emerged: the great majority of the lines either were owned by foreign countries such as India, Australia, and Singapore, or had already been patented by pharmaceuticals and biotechs. They questioned what it would cost to obtain approved cell lines and were concerned that the lines would have no therapeutic value. Most of them had been created by combining human cells with mouse feeder cells. The contamination by cells from another species might prevent FDA approval for clinical trials. Dr. Oswald Steward, director of the Reeve Irvine Research Center at the University of California at Irvine, was the first American scientist to obtain one of the lines in a show of good faith. His laboratory signed a contract with Geron, Inc., a pharmaceutical company based in Menlo Park, California. The line was given to Dr. Steward and his team of forty-three researchers dedicated to spinal cord repair, with the understanding that Geron would retain the rights to the commercialization of any FDA-approved technology that emerged
from the Irvine lab. The first experiments were conducted in February 2002: paralyzed rats in the acute phase of injury were injected with the human stem cells. They all survived, but the extent of their recovery is being kept secret pending publication in a scientific journal. The next experiments were performed in April using the same technique on rats that had been injured for three or four months, in order to simulate the chronic phase of injury in humans. Those results were also withheld from the media pending peer-reviewed publication.

My reaction to the president’s decision on August 9 was that he had created a research project—something to keep scientists busy for a while without causing too much controversy—instead of creating a therapeutic project that would lead to human trials as quickly as possible. Many scientists and disease groups hope that, given his overwhelming popularity, he will decide it is politically safe to revisit the issue.

But because the current policy means that laboratories will not receive government funding to harvest excess embryos (which would have been allowed under the Clinton guidelines), scientists have had to find other ways to make progress. The most promising development is
somatic cell nuclear transfer
, also known as nucleus
transplantation or therapeutic cloning. This is therapeutic technology that does not require the destruction of a fertilized embryo that could be implanted in a womb and become a human being. Instead, scientists remove the nucleus from an unfertilized egg and replace it with the patient’s DNA. Within a few days, stem cells that will probably not face rejection by the patient’s immune system can be extracted and multiplied indefinitely. Given that we have always understood “life” to be the creation of a union of male and female, I can understand the moral dilemma of destroying fertilized embryos for research. But to insist that an unfertilized egg—which is actually just a cluster of cells—should have the same standing and be entitled to the same protections as a human being is beyond my comprehension.

In August 2001 the House of Representatives banned both therapeutic cloning and reproductive cloning (which produced Dolly the sheep) by a one-hundred-vote margin. Senator Sam Brownback (R-Kansas) introduced a Senate version of the bill that would not only ban all cloning, but actually criminalize it. Thus a spinal cord patient could travel to England for therapy, then return to the United States,
walk
off the airplane, and be arrested on the spot. Senators Edward
Kennedy and Dianne Feinstein countered with a far more rational bill, S.1758, which would criminalize reproductive cloning but allow therapeutic cloning to proceed, funded and regulated by the NIH. In March 2002 I testified before the Senate Health, Education, Labor, and Pensions Committee, stating in part:

When I started out as a patient advocate, I thought the major obstacles to achieving a cure for spinal cord injury would be a lack of funding and a shortage of scientists willing to dedicate their careers to an orphan condition. As it turned out, those would not be the problems. NIH × 2 actually succeeded: in 1998 the NIH research budget was $12 billion, but the budget for FY 2003 is just over $27.2 billion. Today regenerative medicine
is attracting thousands of young postdocs all over the world who believe that effective therapies for Parkinson’s, Alzheimer’s, brain injury, stroke, MS, ALS, and other disorders of the central nervous system can be achieved. Instead, the main obstacle is the controversy over embryonic stem cells and therapeutic cloning. The NIH has not been allowed to fund a single grant for embryonic stem cell research using excess embryos from IVF clinics. Because of the questionable viability of the stem cell lines approved by President Bush, for many months the NIH received an alarmingly low number of grant applications, even though Health and Human Services secretary Tommy Thompson stated that some $15 million was available. By May 2002 the restrictions had eased considerably. An additional seventeen lines had been created without mouse feeder cells and the number of grant applications increased dramatically, even though the issue of therapeutic cloning remained unresolved.

I’ve often talked about the transition I have to make almost every morning: I have to emerge from the dreams in which I’m completely healthy and able to do anything and adjust to the reality of paralysis. In the weeks and months after my injury, that transition was often very difficult. After a few years it became less so, because I believed that the scientists were progressing
well, that more funding would become available, and that the light at the end of the tunnel would continue to shine brighter every day. I never imagined for a moment that a heated political debate over a clump of cells would have such an effect on me. Now instead of waking up just to rediscover that I’m paralyzed, I wake up shocked by the realization that I may remain paralyzed for a very long time, if not forever.

Once that moment passes, I begin my day. Rationality and hope return. I’m able to focus on what can be accomplished: through education, we can change people’s minds, even reverse the positions of powerful political opponents. I remember that, like it or not, my role as an advocate is to speak on behalf of other patients who will never be heard.

It is impossible to legislate compassion, yet that is what is needed most. The majority of legislators who support the most progressive research have an emotional connection to the issue—a parent with Parkinson’s, a spouse with Alzheimer’s, or a child with juvenile diabetes. Now we have to reach out to influential leaders in both the public and private sectors who are not directly affected by disease or disability. We have to ask them to do something much more difficult, but something that will make all the difference: just imagine what it is like to be somebody else.

I
t began with the index finger of my left hand. I was sitting in my office talking to Dana late one afternoon in November 2000. I forget the topic of our conversation, but I must have been saying something emphatically because my fingers were moving on the armrest as I spoke. Dana noticed and asked me if I was doing it on purpose. I told her that I wasn’t, and she said, “Well, try.”

I think if anyone else had asked me to try to move a finger nearly five years after my injury, I would have resisted. I don’t like to fail. The enervation necessary to move the fingers comes from a segment of the spinal cord (T-1) far below the level of my injury. There was no reason to expect that signals from my brain could make their way down the cord and cause a finger to move. But Dana wasn’t putting me on the spot; it was just a game, and it didn’t matter if I lost.

I looked at the index finger of my left hand for quite a long time, literally trying to establish a relationship with it. I believe that the body wants to be whole, and I remembered the process of healing my infected left ankle several years earlier. Dana waited patiently, but I got the feeling that if I didn’t do something soon she would go into the kitchen to start dinner. Staring even more intently at my finger, I suddenly said, “Move!” And it did. From the tip to the first joint, it moved up and down, tapping rhythmically on the armrest. We both watched in disbelief as it kept going. After a few moments I focused again and commanded, “Stop!” It did.

Dana leapt out of her chair and came over for a closer look. We both knew I had to do it again, perhaps several times, to prove it wasn’t just a fluke. The second time, I gave the same instructions and got the same results. The third time, Dana told the finger when to move and when to stop. The fourth time, Dana gave the orders while I kept my eyes shut. It worked again.

She held me for a long moment, and when she pulled away her eyes were moist. We called up Dolly Arro, our head nurse, from her station downstairs to see if I could repeat the demonstration for her. To put it mildly, Dolly flipped out. She kept saying, “No way, no way! I have to call Harlan” (Dr. Harlan Weinberg, the
doctor in charge of my case). I turned to Dana and said, “At least it’s good for a party trick.”

I had to say that in order to keep everything in perspective. I had been exercising on a regular basis since my days as an inpatient at Kessler in the second half of 1995. By early July the bone graft from my hip to the injury site at C-2 and the titanium reinforcement wired to the base of my skull had fully stabilized my neck. My physical therapist, Erica Druin, started our sessions by transferring me out of my chair onto a huge table in the gym. I lay flat on my back on a thick mattress with my head propped up on triangular pillows. As soon as I was comfortable, Erica would take the pillows away and instruct me to move my head as far as possible from side to side. At first I could move it about 45 degrees to the right, but only about 30 degrees to the left because the tendon on the right side of my neck is shorter than the other—Dr. Jane had had to cut it to gain access to the cord. While that movement may not sound like much, it was a sign of real progress: I no longer had to wear the dreaded cervical collar and was actually being challenged to turn my head with maximum effort. We always did at least three sets of twenty repetitions of the side-to-side motion, adding more when I wasn’t too tired. Then we introduced sets of raising my head off the mattress and easing it down again. At first I could only muster the strength to
lift my head up a few inches. But before long, with Erica’s encouragement, I could raise it high enough to see my feet and hold it in that position for a very painful but highly satisfying thirty seconds. With daily repetition my neck regained lost muscle mass and flexibility.