The case for expanded stem cell research: An update

Since last fall, when Illinois Comptroller Dan Hynes announced his effort to fund all forms of stem cell research in Illinois through a bill that would have taxed voluntary cosmetic procedures and created the Illinois Regenerative Medicine Institute, the move to expand stem cell research here in Illinois has taken a positive turn. The momentum to expand stem cell research has continued at the federal level as well, even in the face of a small minority who oppose the research. Because the polling data consistently reflects widespread support for all forms of stem cell research, both adult and embryonic, these developments should surprise no one. The more our legislators learn about the promise of the research, the more support for change grows, beginning here in Illinois and continuing at the federal level.

The bill that would have established the Illinois Regenerative Medicine Institute was supported by a wide range of health care advocacy groups, including the Juvenile Diabetes Research Foundation, the Parkinson's Action Network, and the Les Turner ALS Foundation, among many others, as well as major Illinois research institutions like Northwestern University and the Research Institute at Children's Memorial Hospital. But despite the widespread support of these institutions, organizations of plastic surgeons and industries that support them, like botox manufacturers, opposed the legislation, along with some right to life groups who have wrongly attempted to link embryonic stem cell research with the abortion issue. Against this backdrop of well-funded opposition, the bill's chances of success in the Illinois General Assembly were less than certain and it was not called for a vote. The legislative session ended in a more timely fashion than the previous year, with the legislature approving a budget that included a $10 million line item for medical research.

On July 13, 2005, Governor Rod Blagojevich signed an Executive Order designating that line item to all forms of stem cell research. At the press conference where he made the announcement, the Governor was accompanied by some of the legislative leaders who have consistently supported this issue over the last several years, including Comptroller Dan Hynes, House Republican Leader Tom Cross, whose daughter has type 1 diabetes, Senator Jeff Schoenberg and House Representative Sarah Feigenholz. In addition, representatives from the same health care advocacy groups that had supported the prior stem cell bills in the Illinois General Assembly, including numerous children suffering from type 1 diabetes, and children suffering from other devastating diseases, like Canavan's (a rare genetic disorder that results in severe neurological dysfunction and eventually causes the brain to degenerate into a spongy mass), stood with the Governor in support of his Order.

I delivered remarks at the press conference applauding the Order:

I am not content to wait while politics cloud the science and interfere with real progress towards cures. Like any mother, I want a healthy child, and barring that, access to scientific advances supported by our major Illinois research facilities to make my child healthy again. Illinois can now join the growing number of states that have embraced the best medical research has to offer for the benefit of people like my daughter Clara and our friends. She's done her part-pricking her finger 10 times a day to test blood sugar, putting a large needle into her stomach to deliver insulin, counting the carbs of every bite of food she eats-now our legislative leaders have done their part too. Let's let the researchers get to work on the cures.

In 2002 nearly 7 percent of the adult population in Illinois had diagnosed diabetes. Direct and indirect costs of diabetes in Illinois totaled about 6.8 billion dollars in 2002. Progress towards a cure for diabetes and the other diseases that could be cured through stem cell research is imperative not just economically, but also morally because we care about those who suffer from disease.

We now await the implementation of the Governor's Executive Order, which will occur under the purview of the Department of Public Health. The experience of other states will be instructive in this process. California has not had an easy time implementing Proposition 71, which allocated $3 billion to stem cell research in that state and immediately drew the attention of researchers who have been hampered in their ability to do their work by the federal policy and may find California a more supportive place to do medical research. And while Illinois has been busy making progress towards an expanded stem cell research policy, other states have had success defeating bills that would have restricted, or even criminalized, stem cell research, including Missouri and Texas.

All of the effort in the states would be less important if the federal government had a more expansive policy of funding stem cell research. Since August 2001, in a compromise that did not fully satisfy either side in the debate, federal funding of embryonic stem cell research has been limited to lines of stem cells already in existence as of that date. Because those embryonic stem cells had already been destroyed at the time of the announcement, the government would play no part in their destruction by allowing funding on research occurring after the announcement. For some time now, health care advocacy groups have been working on legislation to expand the policy consistent with this view. The result is H.R. 810, The Stem Cell Research Enhancement Act of 2005, which would allow federal funding of research on embryos donated through a process of informed consent by couples who have created them during the course of fertility treatments and have determined that they will not use the excess embryos to create additional children (or pay to store them or donate them to others). H.R. 810 passed in the United States House of Representatives this spring by a vote of 238 to 194, a total that included 50 republicans who broke with the President, despite his threatened veto.

The U.S. Senate may soon consider H.R. 810 for a vote on the floor; though the vote may be delayed by legislative developments related Hurricane Katrina and new Supreme Court appointments. In an exciting development occurring at the end of the legislative session before the August recess, Senate Leader Bill Frist, who is also a doctor, announced that he now supports H.R. 810: "While human embryonic stem cell research is still at a very early stage, the limitations put in place in 2001 will, over time, slow our ability to bring potential new treatments for certain diseases. Therefore, I believe the president's policy should be modified." This important announcement by Senator Frist could have the affect of drawing additional votes in the Senate, where there is bi-partisan support for the bill already, with notable pro-life Senators like Senator Hatch already in support of the bill as a co-sponsor.

In a more disturbing development, the Senate plans to consider other stem cell bills along with H.R. 810. One bill that could slow progress on stem cell research is S. 658, the Human Cloning Prohibition Act, which would ban not just human reproductive cloning, which virtually everyone opposes, but also somatic cell nuclear transfer (SCNT- often called "therapeutic cloning"). SCNT provides researchers with another means to create stem cell lines by combining a donor cell that has had its nucleus removed with another cell from the patient and chemically triggering the combination to grow. When scientists use SCNT to create stem cells, no sperm is used and the resulting cell has no chance of developing into a human being because it is never placed in a uterus. Scientists believe SCNT offers great therapeutic and research potential, in part because it would result in replacement cells genetically matched to the patient. An earlier version of this bill passed the House several years ago.

Since human embryonic stem cells were first isolated in 1998 researchers have been making progress, and with the support of state and federal government they will make more progress. Advocates have worked tirelessly to educate our legislators and our legislators have gotten the message: their constituents expect their elected representatives to support medical research that will benefit the sick. No one wants to be on the side of an issue that delays hope and health for millions. We will all benefit from an expanded policy one day.

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Ms. Livingston, formerly a partner at Jenner & Block, is currently the volunteer Legislative Chair for the Juvenile Diabetes Research Foundation-Illinois.