Small Family Fund Has Big Plans to Improve How Doctors Treat Pain

Shirley Steinman Katzenbach harbored a lifelong love of medicine. A onetime emergency-room volunteer and a

generous donor to health and other causes, Ms. Katzenbach was also a regular reader of sophisticated medical publications, including The Journal of the American Medical Association.

“If she had come out of a generation or a family that had encouraged a profession, she would have become a doctor or a nurse,” recalls her younger daughter, Caroline N. Sidnam. Instead, Ms. Katzenbach, whose wealth came from her family’s Pennsylvania news-media company, Steinman Enterprises, married three times, had three children, and became active in charitable causes.

When Ms. Katzenbach died in 1991 at age 74, she left $13-million to her children — Ms. Sidnam (an architect) and her older half siblings, Robert D.C. Meeker Jr. (a lieutenant in the Bladen County, N.C., sheriff’s office) and Pamela M. Thye (an active member of several charitable boards) — to use philanthropically. The foundation they formed here, the Mayday Fund, is devoted to finding ways to alleviate and better manage physical pain.

While small in size, the Mayday Fund has been instrumental in bringing the need to improve pain treatment to the medical profession’s attention, experts say. Its grants have paid to train doctors and nurses in the treatment and documentation of pain, particularly among children, as well as financed legal research that helps protect doctors who prescribe pain medicine for those who need it from unwarranted disciplinary actions. Several of the fund’s modest grants have spurred larger ones from foundations and the government.

Relieving Patients’ Discomfort

The fund gets its name from both Ms. Katzenbach’s birthday of May 1 and the word that is the international distress call signaling a cry for help. While Ms. Katzenbach never suffered from debilitating chronic or acute pain in her lifetime, she did undergo medical procedures that left her with the opinion that doctors could do more to reduce patients’ discomfort, as well as find a cure for their ailments, says Ms. Sidnam.

As Ms. Katzenbach’s children started developing a philanthropic plan for the fund, they quickly came to share their mother’s view. The potential for advances in pain treatment were great, they found, but the issue had not garnered much financial support or attention.

Only 0.6 percent of the National Institutes of Health’s budget goes to “basic and clinical” pain research, while 20 percent of doctor visits are because of pain, according to an article by Mitchell B. Max, a senior investigator at the federal National Institute of Dental and Craniofacial Research, published in The Journal of Pain last September.

“The health-care system is good for treating disease and terrible for treating comfort,” Dr. Max says.

So far, the Mayday Fund has distributed $7.4-million to projects in the United States and Canada.

Ms. Katzenbach’s son, Mr. Meeker, says that while the dollars may seem small, the fund’s strength has been in playing the role of “kickoff artist,” recognizing good ideas early in their development and paying to get them off the ground. He adds, “It’s hard for us to pursue things right to the end, but if we have gotten them started and provided a way for them to be successful, we feel a part of that success.”

Many of the fund’s small grants have prompted other foundations and the government to give.

For example, after Mayday gave $71,000 to researchers at the University of California at Los Angeles to investigate treatments for children with chronic pain, the researchers won nearly $2-million from the National Institutes of Health.

“The Mayday Fund has catapulted people into a position of visibility,” says Sandra H. Johnson, a Mayday grantee and professor of law at Saint Louis University’s Center for Health Law Studies. “In terms of resources, they have less under their control than some of the biggest health-care-oriented foundations, but on the other hand they are very intentional about what they do and they are very persistent to make sure that what they give money for fits their priorities.”

Working Together

Mayday didn’t have to exist. Ms. Katzenbach’s will stipulated the money could be divided among her heirs and donated separately to charity, or pooled together to form a foundation to benefit causes of her children’s choosing. Her son and two daughters decided to keep the money together because they felt it was their mother’s wish to encourage her scattered children to work together toward a common purpose, and also because they could make more of an impact as grant makers with one big pot of money compared with three smaller ones.

When their mother died, Ms. Thye lived near Boston, Ms. Sidnam in New York, and Mr. Meeker in rural North Carolina. “We are all extremely independent, and we would probably never see each other if we weren’t drawn by the bond of the fund,” says Mr. Meeker.

Ms. Sidnam says her mother received so much “positive energy” from her charitable giving that she wanted to pass that experience on to her children. “In spite of the fact that she wasn’t a demonstrative, affectionate person,” Ms. Sidnam says, “her legacy to us was the things that turned her on intellectually, the ideas about life, about humanity, about medicine, and this was just another big idea she wanted to share with us.”

The fund is run by a paid executive director, Christina M. Spellman, who performs a range of tasks such as answering e-mail messages and paying visits to grantees to discuss how their work is progressing. In addition to Ms. Katzenbach’s three children, board members include John C. Beck, a longtime friend of Ms. Katzenbach’s and a financial manager.

Ms. Spellman is more in touch with the siblings than they are with one another, sending them articles about pain from newspapers and medical journals, and continually keeping them abreast of fund developments and decisions that need to be made.

The trustees meet four times a year to decide which projects to fund. “We are not trying to resolve family issues — we are trying to resolve issues that are important to society, we hope,” says Mr. Meeker, who says he attends the meetings sporadically because he dislikes New York.

In the past decade, Mayday’s assets have nearly doubled in size, to about $25-million, and last year the trustees awarded $735,583 in grants.

The foundation receives about 200 grant applications annually, and last year provided money to 15 projects, including ones dealing with decreasing the pain of immunizations in children and developing a model of care that would help treat pain among the elderly and people with AIDS.

Other grants from the past several years have included money to help start a pediatric headache center in Lancaster, Pa., to treat such things as migraine pain, which causes some children to miss weeks of school.

Another grant for $175,185 paid to investigate and map the way the brain reacts to pain. The researcher who received the grant, David Borsook, then at Massachusetts General Hospital, has since started a biotechnology company that will use these maps to develop new drugs to treat chronic pain. “Without Mayday, none of it would have happened,” says Dr. Borsook. “It was the right amount at a critical time.”

Role of Drugs

One of the more controversial issues Mayday has tackled involves the role opioids — drugs that help ease severe pain — should play in pain relief. Although opioids, many of which are legal, can greatly benefit people in pain, especially people who have cancer, the public perception of them is that opioids are always “dangerous and addictive,” says Ms. Johnson, of Saint Louis University, a view fueled by news reports such as the talk-show host Rush Limbaugh’s addiction to OxyContin. Early in its existence, the fund provided a research grant to track how often doctors were being disciplined by governing medical boards because they were perceived as prescribing too many opioids and to evaluate how those actions might have been hampering pain treatment.

“What we found was that doctors would not prescribe the right drug for the patient, because they were afraid medical boards would revoke licensures,” says Ms. Johnson, who oversaw a group of Mayday research grants given to help investigate legal and regulatory constraints on pain relief. Mayday then paid for a meeting, organized by the American Society of Law, Medicine & Ethics, in Boston, that brought together people from the medical, legal, foundation, and insurance worlds to discuss the findings face to face.

Conversations that took place at the meeting, says Ms. Johnson, helped prompt the Federation of State Medical Boards to revise its policies with the help of a grant from the Robert Wood Johnson Foundation. “We have moved away from ‘just say no’ to a more analytical and evidence-based approach” to treating pain, Ms. Johnson says. “That is a huge change.”

The meeting also helped prompt the Patrick & Catherine Weldon Donaghue Medical Research Foundation, in West Hartford, Conn., to make a $320,000 grant to the American Society of Law, Medicine & Ethics to research obstacles to pain treatment in that state.

Mr. Beck, one of the fund’s trustees, says he believes Mayday eventually will have to take a larger role in the debate over whether certain opioids, such as marijuana, should be made legal for use by people with chronic pain. It’s an issue that “we have barely scratched and that has to receive more effective attention,” he says.

If research “proves that opiates are the first line of defense against chronic pain,” says Mr. Beck, “society is going to have to find a way to incorporate them as a proper part of the medical practice.”

Paid Advisers

Lack of a huge endowment has never prevented Mayday from attracting top-notch paid advisers to help guide their grant making, including the late David E. Rogers, former president of the Robert Wood Johnson Foundation, and William M. Dietel, former president of the Rockefeller Brothers Fund.

Mr. Dietel joined Mayday about six years ago and has pushed the trustees to collaborate more with other like-minded foundations and to bring together doctors, lawyers, communications specialists, and others interested in pain treatment to talk to the board about new developments.

“A foundation has a lot more to give than just money, but a great many foundations don’t recognize that,” says Mr. Dietel. “One thing to give is their ability to convene people, call a meeting and say, ‘We are interested in pain,’ and then ask, ‘Where is treatment going?’”

As a result of such meetings, the foundation has most recently decided to devote dollars to improving how emergency doctors and nurses handle pain assessment and treatment, an area that some doctors believe could be better. For example, the pain level of patients is measured just once in some emergency departments, at the beginning of a visit, so medical staff members have no way of knowing if their treatment of the patient’s pain provided enough relief. In addition, the foundation will devote dollars to improving pain treatment for people who cannot tell doctors about their needs, such as Alzheimer’s patients and infants.

Mr. Dietel, Ms. Spellman, and Ms. Katzenbach’s children do not have medical degrees or any expertise in science. But over the past decade the foundation has recruited a cadre of experts it relies on to help evaluate grants.

In addition, Mayday has a scientific adviser on staff, Robert A. Cook, chief veterinarian at the Wildlife Conservation Society, in the Bronx, N.Y., who brings his perspective from the animal world to bear on Mayday’s grant making. The board chose Dr. Cook because it wanted someone who was fluent in science and medicine but would not be a potential Mayday grantee. Also, his experience with animals is proving helpful as Mayday looks for ways to treat pain among people who cannot speak, such as infants or some Alzheimer’s patients.

Even with the advisers, Mayday officials have tried to learn as much as possible from a layman’s perspective about the pain field. Being involved with Mayday is “almost as though one has been given a postdoc to learn about pain medicine,” says Ms. Spellman, who was a sociology professor at New York University before joining the foundation two years ago.

Next Generation

Ten years after the fund’s start, the trustees say they have no immediate plans to shift course, even though Ms. Katzenbach’s children all have other philanthropic interests to which they give significant sums from their personal finances. For example, all three donate to their local zoos.

The Mayday trustees are careful not to spend more than the legally required 5 percent of the fund’s assets each year, in a desire to be able to pass the foundation’s reins to Ms. Thye’s 30-year-old son and Ms. Sidnam’s three teenage children when the time comes. Ms. Sidnam’s daughter has recently shown an interest in Mayday, attending board meetings and helping assemble the 2002 annual report last summer.

But Ms. Thye says the next generation to oversee Mayday will be free to alter the foundation’s focus, the same way Ms. Katzenbach placed no restraints on the current trustees.

Such flexibility is key to Mayday, says Ms. Sidnam. “We could switch to supporting river otters in Bolivia if we want,” she says, “but it’s not time to do that yet.”

THE MAYDAY FUND

History: Created in 1992 by the three grown children of Shirley Steinman Katzenbach with the $13-million she bequeathed to them for charitable use.

Mission: To alleviate the “incidence, degree, and consequence of human physical pain,” particularly in children and people who have difficulty communicating, such as Alzheimer’s patients. The foundation also concentrates on improving the way pain is assessed and treated in emergency settings and applying the results of scientific research to practical use by doctors.

Assets: About $25-million

Grants: $735,583 last year; $672,692 in 2002

Application procedures: Applicants should send by e-mail a two- to three-page letter of inquiry that describes their project and includes an estimated budget amount.

Key officials: Christina M. Spellman, executive director

Address: c/o SPG, 136 West 21st Street, Sixth Floor, New York, N.Y. 10011; (212) 366-6970; mayday@maydayfund.org

Web site: http://www.painandhealth.org