Groups Fight Diversion of Funding to Study Lupus

The two leading lupus support groups in California have launched a campaign to persuade Assemblyman Tom Bane (D-Tarzana) and other state officials not to divert $572,000 earmarked for lupus research to other health programs.

They also want to convince the officials that a controversial state Lupus Appropriations Board should not be abolished.

The three-member board, which has dispensed nearly $6.2 million in state funds to scientists since it was established by the Legislature in 1976, has not held its annual meeting to award $572,000 appropriated to it in this year’s budget. The board finances research on lupus, an incurable and potentially fatal disease of the autoimmune system.

Bane, the board’s legislative champion, and Clifford Allenby, secretary of the Health and Welfare Agency, said earlier this month that they had agreed to divert the unspent funds to other social programs. Allenby said the money would go to research on either AIDS or sudden infant death syndrome.

Continue Funding

This prompted the Southern California chapters of the Lupus Foundation of America and the American Lupus Society to send letters Saturday to Bane, Department of Health Services Director Dr. Ken Kizer and Gov. George Deukmejian urging them to use the money for lupus research and continue funding in future years. The groups will also ask members to contact Kizer in support of the program.

“We hope these funds will not be diverted elsewhere,” said the letter to Bane, which was also signed by several prominent California rheumatologists.

“We strongly urge you not to abolish the Lupus Appropriations Board as their work is vital to the 100,000 lupus California patients as well as their families and friends.”

Bane, whose wife Marlene has headed the lupus board since its inception, said in an interview that the unspent lupus research money in the state budget would revert to the general fund at the end of the present fiscal year, which is June 30.

“Every day we have groups coming in begging for money,” Bane said, citing those seeking funds for mental health, Medi-Cal and acquired immune deficiency syndrome. “Their needs are greater and more critical than those who are asking for funds for lupus research.”

Bane said last week’s disclosure that state tax receipts this year and next will be $2.5 billion higher than previous estimates would not affect the lupus board because much of the windfall will go to education and the rest to hard-pressed social programs.

Won’t Seek Funds

He said he would not seek funds for the lupus board in the 1989 fiscal year budget, but added that he does not plan to introduce legislation to dissolve the panel. It might be funded in the future if the Gann amendment, which limits government spending, is eased, he said.

James W. Morgan, Allenby’s deputy at the Health and Welfare Agency, which includes Health Services, said Friday that he was unable to anticipate the agency’s response to the lupus lobbying effort.

“Short of seeing the letter and determining how compelling the arguments are, it would be premature of me to comment on it,” Morgan said.

The letter-writing campaign evolved after negative news accounts about operation of the obscure lupus board. The board’s makeup, evaluation process, some of its grant decisions and its link to a campaign fund-raising operation run by Marlene Bane have raised questions among grant applicants, health services officials and board members.

The top recipient of funds, for instance, is Dr. Raymond L. Teplitz, a longtime friend of the Banes and a regular contributor to Tom Bane’s campaign committee. Five prominent lupus authorities said Teplitz is a virtual unknown in the field and has published little on lupus.

The lupus board has not met in 17 months because Marlene Bane has not agreed to a meeting date. The Banes have been angry about the more active role played by the Department of Health Services. Health officials said they became more involved after they decided that grants were being awarded without clear guidelines.

Bane Angry

Bane expressed anger that a health services administrator assigned to the lupus board supported appeals from two scientists whose grant applications were rejected by the board. Bane said that funding the proposals would have violated state law.

Representatives of the lupus support groups criticized some lupus board decisions and processes, such as the $751,473, or 12% of the lupus funds, that Teplitz received. But they emphasized that most of the money went to prominent researchers at well-established programs, such as UCLA, USC and Stanford.

“Aside from the fact that they have funneled money to Dr. Teplitz, we are pleased and do not want this board to be abolished,” said Leslie Epstein, president of the Bonnie Bernard Denn chapter of the American Lupus Society, which claims 1,200 members in Southern California.

Epstein said she would like to see the board’s decision-making process revised to include formal peer review of research proposals. Unlike most academic and government grant-making panels, the lupus board does not circulate proposals among a dozen or more recognized experts in a given field for formal review before awarding grants.

The Lupus Foundation of America and the American Lupus Society are nonprofit organizations that provide patient and physician education, support for lupus sufferers and funds for research. Normally intensely competitive, the groups were brought together by the potential abolition of the state’s lupus funding program.

Systemic lupus erythematosus is a rheumatic affliction related to arthritis in which the patient’s body develops antibodies against its own tissues. Half a million to 1 million people in the United States, most of them women, suffer the often debilitating disease, including Marlene Bane.

The lupus foundation, the largest lupus group, claims 102 chapters nationwide and 47 international chapters. It has 1,800 dues-paying members in Southern California. The lupus society is the second-largest lupus organization with 25,000 members nationwide.