[Congressional Record Volume 142, Number 138 (Monday, September 30, 1996)]
[Senate]
[Pages S12041-S12042]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




        BIOMEDICAL RESEARCH AT THE NATIONAL INSTITUTES OF HEALTH

  Mr. HATFIELD. Mr. President, in the waning days of any Congress, the 
full range of emotions are not far from the surface in each one of us. 
We feel the thrill of success as we see our legislative initiatives 
become law and the disappointment of knowing that some of our 
priorities must await a new year. As I leave the Senate after thirty 
years of service, I leave next year's challenges to others.
  Among the bills that did not become law this year is S.1897, a bill 
to revitalize the National Institutes of Health. This bill is the fine 
work of my friend and colleague Senator Nancy Kassebaum. Once the 
Senate passed the bill last Thursday, Senator Kassebaum worked 
tirelessly to try to achieve an agreement with the House to pass the 
bill. Unfortunately, an accommodation could not be reached and as a 
result, many fine legislative provisions that would dramatically 
improve the work of the NIH, fall to the wayside this year. This is all 
the more frustrating given the fact that the House hasn't held one 
hearing on NIH this year and essentially stopped the bill because they 
hadn't had a chance to give input.
  Mr. President, I have a passion for medical research. It provides the 
sole hope for an improved quality of life for so many who suffer. 
Congress has recognized the importance of biomedical research by 
providing a 6.5-percent increase for the National Institutes of Health 
this year. We provided a 5.7-percent increase last year--all told an 
increase of 12.2 percent over a 2 year period. I can think of few 
domestic discretionary programs which have received this kind of 
attention in this Congress and none with greater merit. In terms of 
return on our Federal investment, there is no program which brings 
greater return in terms of improving quality of life in this country.
  I have four pieces of my own legislation attached to S. 1897, all of 
which I believe will be enacted over time. While not accomplished on my 
watch, I am hopeful that others in the Senate will take on these 
initiatives and insure their passage. Senate bill 184 codifies the 
Office for Rare Disease Research at the NIH. This office has been 
created in the appropriations process to coordinate the research on 
over 5,000 rare diseases--diseases that affect only a small portion of 
the population and frequently have no research project or registry. I 
have been attempting for 2 years to have the office codified in law and 
while the Senate has passed this bill twice, it has not become law.
  The NIH bill also includes S.684, the Morris K. Udall Parkinson's 
Research Assistance and Education Act of 1995. Mr. President, this bill 
has over 62 cosponsors in the Senate and over 100 in the House. It 
establishes Parkinson's Disease research centers across this country 
and signals the NIH that Congress is not satisfied with the $30 
million. that NIH currently spends on this disease--my bill calls for 
an $80 million investment to cure this disease. I would like to 
compliment that Parkinson's community, and particularly Joan Samuelson 
of the Parkinson's Action Network, for the work they did to propel this 
bill forward. The Parkinson's community has my deepest respect for 
their advocacy.

  The bill also includes S. 1251, a bill that Senator Harkin and I have 
long championed to establish a National Fund for Health Research. The 
version included in Senator Kassebaum's bill established the shell of 
the fund, and left the financing mechanism to a future Congress. My 
preference is a tobacco tax and a Federal income tax kickoff, but a 
range of options exist. The important point is that a trust fund 
recognizes the fact that the appropriations process will never yield 
adequate resources to fund the promise of scientific research which 
exists today. We need to do more and the American public, in opinion 
poll after opinion poll, has indicated they support us doing so.
  Finally, the NIH bill includes a new initiative of mine, the Clinical 
Research Enhancement Act, S. 1534. This bill will increase funding for 
clinical research, improve training for persons planning clinical 
research careers, and modify the focus of the NIH to make it more 
receptive to clinical research proposals.
  There is no question that NIH needs more resources to fund all 
research. However, as we seek to find these funds, we must also look 
within NIH to ensure that the environment is supportive for clinical 
research applications. A recent report from the Institute of Medicine 
presents some alarming trends: the number of young investigators 
applying for grants dropped by 54 percent between 1985 and 1993, the 
number of federally funded grants awarded to persons under the age of 
36 has decreased 70 percent in this period, and at the same time, young 
investigators are racking up average debt loads of $63,000. If not 
rectified, these trends will result in a stunning lack of human 
infrastructure to deliver a knowledge base that has applicability to or 
utility for the benefit of patients. It is not an understatement to 
assert that clinical research is in a state of crisis. Such a crisis 
may lead to a serious deficiency of clinical expertise, a paucity of 
effective clinical interventions, an increase in human suffering, and 
ultimately, an increase in the cost of medical care.
  All of these initiatives deserve our support. I am pleased that the 
Senate has endorsed them and I hope that the new Congress will begin 
where we ended this year and include these provisions as a starting 
point on the new version of the NIH revitalization bill.
  Before I conclude Mr. President, I ask to have printed in the Record 
a report by Washington Fax of a hearing that I chaired with Senator 
Cohen on September 26, 1996. This was a significant hearing and I hope 
my colleagues will take the opportunity to review its content.
  The report follows:

     Extraordinary Hearing Grips Senators, Witnesses, and Observers

       No one noticed when, but at some point ego and arrogance 
     got up and left the Senate hearing room.
       It may have been when the witnesses began to talk:
       Gen. Norman Schwartzkopf, relating a sad commentary on the 
     American male acting like an ostrich when it comes to 
     prostrate cancer and other maladies;
       Joan Samuelson, a 46-year-old lawyer diagnosed with 
     Parkinson's disease nine years ago, relating how almost 
     immediately things dear to her--playing the piano, running, 
     backpacking--were taken from her, and then essential 
     functions began to be stripped away;
       Rod Carew, a Baseball Hall of Famer introducing us to his 
     daughter, Michelle, via video tape--recalling her smile in 
     the final days of her 18-year life.
       And then there was Travis Roy of Yarmouth, ME, a 21-year-
     old quadriplegic who recalled his life's dream lasting 20 
     seconds on the hockey ice, and now he must wants to hug his 
     mother and his girlfriend.
       Then, at first haltingly, almost embarrassingly, the room 
     began to fill with emotion--honest straight-from-the-heart 
     emotion, rising from the experience of one human being 
     listening to another and hearing.
       The scene was a special joint hearing Thursday by the 
     Senate Committees on Appropriations and Aging called to 
     gather testimony on the benefits of biomedical research and 
     the human cost of injury and disease.
       As the first panel of witnesses spoke, the hubbub and noise 
     of self-importance and pressing tasks, always a part of a 
     congressional hearing, slowly stopped. The audience breathed 
     ever so lightly; the door from the room stood unused.
       Distances began to disappear. None remained between the 
     dias, where Sens. Connie Mack, R-FL; Robert Bennett, R--UT; 
     Conrad Burns, R-MT; William Cohen, R-ME; Mark Hatfield, R-OR; 
     David Pryor, D-AR; John Glenn, D-OH; and Herb Kohl, D-WI, 
     were seated, and the witness table.
       The trappings of a hearing were dropped. It was like 
     sitting around a supper table, where friends who know each 
     other warts and all open themselves, trusting their 
     companions to share thoughts, to understand, to help, to 
     reach out and touch where it hurts.
       Carew, Samuelson and Roy with great dignity opened their 
     souls, because they want to help stop the pain--not only 
     theirs--but the pain of others too. Hatfield and Cohen, the 
     good hosts, allowed the mood to reign.
       At one point, Mack, at Hatfield's gentle nudge, began to 
     speak, but knowing he couldn't trust his voice, sat quietly 
     waiting. There was no embarrassment for him, only great 
     feelings of empathy. The wave of emotion passed, and he 
     talked of the death from cancer of the brother he loved so 
     much. There was a path of empathy from Mack to Carew.
       Pryor spoke up. ``Talking about one's personal hurts is 
     hard,'' he said frankly. But he went on to relate how his 
     son, a lawyer, thought he had injured an Achilles tendon 
     playing racket ball. When the surgeon got inside my son's 
     leg, they discovered a rare

[[Page S12042]]

     form of malignant tumor on the tendon, said Pryor. If it had 
     been only a few years earlier, my son would have lost his 
     whole leg, and a short time before that, he would have been 
     doomed, he said.
       When Hatfield called upon Bennett, the Utah Senator didn't 
     respond. He obviously wanted to speak, but his grief was so 
     cutting that it took a bit to pass. He directed his remarks 
     to a young researcher who was on one of the witness panels. 
     She had described in her testimony watching the president of 
     Brigham Young University, Rex Lee, loose his battle with 
     cancer. Bennett revealed that Lee was his best friend.
       There was a lull in the conversation, and someone recalled 
     the discussion earlier, when Samuelson described how her day 
     goes. ``From the moment I am awake, I wonder, `how will my 
     body react today?' '' she said. ``Initially it is always 
     stiff and sluggish and unpredictable until it adjusts to 
     medication. For the first hour or two, I cope with a sudden 
     sharp tremor in one or both hands, or one leg suddenly 
     freezing up or contorting in a way that prevents walking. 
     Crawling around the house is sometimes the only way to keep 
     getting ready as I wait for the drugs to begin to work.''
       Then Mack, with an edge to his voice, questioned aloud, 
     ``When are we going to do something about this? To provide 
     what is needed?''
       Hatfield warned that funding for biomedical research is not 
     going to continue to increase and may not even hold stable, 
     because in 1999, 2000 and through 2002 there isn't the money 
     to carry out deficit reductions. ``We are trying to balance 
     the budget by taking money from only 18% of the budget,'' he 
     emphasized. ``And that isn't enough to do the job.''
       This was the last hearing that will be chaired jointly by 
     Cohen and Hatfield. It was probably the most honest hearing 
     on the Hill in a lot of years. Senators came face to face 
     with why research is important. The witnesses now know these 
     Senators as kindred souls who hurt as they do, a new reason 
     to fight on through the pain and the grief.
       Egos and arrogance left the room and honesty, caring and 
     empathy remained. No heros, just folks trying to figure out 
     how to help each other.

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