D.C. Response Slow in Life-And-Death Cases



WASHINGTON - Though Congress rushed to intervene in the case of a brain-damaged Florida woman, those lobbying on life-and-death medical issues that affect thousands or even millions of people often find themselves struggling to get lawmakers' attention.




It often comes down to the willingness of the government and lawmakers to spend money, say those who must make the pitch to Congress and federal agencies.

The National Aneurysm Alliance has been pressing Congress for months to approve federal funding to screen Medicare patients for deadly abdominal aortic aneurysms, but so far has come up empty on money for the roughly $80 to $100 tests. Contrasting that fight with congressional leaders' weekend rush earlier this month to try to get Terri Schiavo's feeding tube restored, the alliance's leader can't hide his frustration.

"Our best estimate is that about 15,000 Americans die each year from ruptured aneurysms, and I grew up in a town in central Connecticut where the entire population was about 30,000, so that's about half my town keeling over," said Dr. Robert Zwolak, chairman of the alliance and a surgery professor at Dartmouth Medical School.

"Those lives would all be saved if we could find them by screening," Zwolak added. "Yes, the Schiavo case is tragic, but the reality is on average about 40 people a day are going to be dying of ruptured aneurysms."

After 12 years of research that led to a possible cure for a worldwide health menace called multi-drug-resistant tuberculosis, Dr. Albert Owens, who formerly headed the Johns Hopkins University Hospital, is finding that getting final funding for the drug is almost as challenging as his lab work.

Owens, now president of FASgen, a drug development company founded by Johns Hopkins faculty members, has hired lobbyists and made at least a half-dozen trips to Washington in recent months asking Congress and federal agencies for the roughly $5 million to $8 million needed for human testing.

"We're looking for help. Now, we're not trying to take shortcuts," Owens said. "On the other hand, we don't want to waste any time either. We want to move forward as quickly as the science will let us move."

Even though the deadly and painful disease is starting to appear in the United States, is on a government bioterror-threat list and federal money helped finance the research to this point, Owens and his team are still searching for the last bit of money they need to get the drug to patients.

Like flu shots, the TB drug isn't considered profitable by big pharmaceutical companies, making government backing one of the few options.

Congress spends billions of dollars on health care every year and is lobbied every day on life-or-death issues. Cancer treatment centers were the subject of at least $1 million in Washington lobbying last year. Emergency medical, surgical and ambulance services, kidney dialysis centers, poison-control centers and serum and vaccine manufacturers were among the other critical medical care interests drawing lobby money.

Lobby groups that are able to put a personal face on their cause — even if fewer people are affected by their issue than another — often are the most successful, said Pat Schroeder, a former Democratic congresswoman from Colorado.

"It's fascinating to me that when you have a generic issue such as breast cancer research, Medicaid funding, trying to do something about health care, people can be very detached from that and it makes it very hard to pass that," Schroeder said. "But if you have a personal case, if you have a person that somehow captures the imagination for some reason, then people become terribly compassionate."

Former Arizona Republican Rep. John Rhodes III, who is now a lobbyist, agreed.

"If you can personalize a tragic situation, that tends to make individual members of Congress decide they want not just personally to be involved but institutionally to be involved," Rhodes said. "And that's wrong."

It's appropriate for individual lawmakers to help a particular person, but that's not a job for the full Congress, Rhodes said.

For example, the government, including Congress, has a major role to play in medical research, Rhodes said. "Narrowing that down to have Congress involve itself in specific individual life-and-death issues such as the Florida case I think is very inappropriate. I don't think that is the Congress' business," he said.



Even when lobbyists put a face on their issue, it's not always enough.

Six months after the Army took the unusual step of trying to make a chemical-attack antidote it plans to buy for troops available to state and local emergency responders, its makers continue trying to persuade Congress and the Homeland Security Department to help state and local governments buy it.

"There is a face on the potential chemical and biological victims," said Rand Sweeney, director of U.S. government contracting for RSDL manufacturer O'Dell Engineering. "We see those faces every day, and unfortunately the things that are most apparent to us are sometimes not a priority to us."