Madam Speaker, I yield myself such time as I may consume. Madam Speaker, I rise today in strong support of H.R. 493, the Genetic Information Nondiscrimination Act, which will prohibit health insurers and employers from discriminating on…
Madam Speaker, I yield myself such time as I may consume.
Madam Speaker, I rise today in strong support of H.R. 493, the Genetic Information Nondiscrimination Act, which will prohibit health insurers and employers from discriminating on the basis of genetic information.
As many of my colleagues are aware, this legislation has been around for quite some time. I have been working on for it more than 7 years, and Congresswoman Slaughter has been working on it for more than 12 years. It's been a long road, and there have been
many times I thought this day would never come; but it is here.
Over this period of time, I have heard stories from my constituents and other individuals across the country about how genetic information was affecting their lives. Quite simply, they are stories of how our laws have failed to keep pace with medical science.
A breast cancer survivor in Chicago told me that even though her doctor recommended she undergo a genetic test to see if she had a 60 percent chance of developing ovarian cancer, which was quite common in the type of breast cancer that they had, she refused the test. She said I can't, I will lose my job.
It isn't that she didn't want to know; quite the opposite. She desperately wanted to know, but she feared if she had an adverse result from the test, she would lose her job. She is not alone; studies show that 85 percent of Americans fear employers will use genetic information to discriminate.
And then there is the woman from Missouri whose sister had suffered from cancer was cautioned by her doctor that undergoing genetic testing would cause her to lose her health insurance. She too chose not to undergo a genetic test. She is not alone; studies show that 84 percent of Americans express concern that health insurance companies would deny coverage based on genetic information.
And then there is the man with a family history of PKD, decided to take a genetic test but chose to use an alias and pay cash rather than bill his insurance just to keep the test out of his medical file. And he also is not alone; 26 percent of genetic counselors themselves admit that they would use an alias and 68 percent said they would pay for the test out of their pocket to protect themselves from discrimination.
The dean of a prominent university in Massachusetts told me that the fear of genetic discrimination was hindering clinical trials, slowing the development of life-saving techniques. At NIH, fear of genetic discrimination is the most common reason people cite for not participating in clinical trials on breast and colon cancers.
Madam Speaker, I have heard these stories over and over again from individuals wanting to know their genetic risk of developing diseases as far ranging as cancer, heart disease, diabetes, Parkinson's, Alzheimer's, Tay-Sachs, and PKD.
The sad fact is that these individuals are avoiding genetic tests that would empower them with the information that could save their lives.
So I want to let all people know that when the House passes GINA today, we will be just one step away, and that would be the signing by the President, from realizing the medical benefits of genetic testing. One step away from ensuring that people will be able to take a genetic test without risking their jobs and health insurance. One step away from ensuring that patients can stop using aliases and paying out of pocket to keep their genetic tests secret. One step away from ensuring that individuals will be able to participate in genetic clinical trials without fear of discrimination.
And the last step is the President's signature, and I am happy to say that he is expected to sign this bill.
Madam Speaker, it is clear to me that by passing GINA and freeing people from fear of genetic discrimination, we can unlock the tremendous life-saving and cost-saving potential of genetic research. More Americans will participate in genetic clinical trials, and more Americans will use these technologies to improve their health.
And with these improvements comes the prospect of dramatically reducing the chronic care costs that cripple our health care system. We now have more than 500 different health advocacy and business organizations supporting this bill. Recent surveys shows that 93 percent of Americans believe that employers and insurers should not be able to use genetic information to discriminate.
With numbers like these, it should be no surprise that the House passed this bill last April 420-3, and the Senate passed it last week 95-0, and the President is expected to sign this measure into law.
Madam Speaker, I reserve the balance of my time.
I reserve the balance of my time.
I have no further speakers, and I reserve the balance of my time.
I reserve the balance of my time.
I reserve the balance of my time.
I thank you, Mr. Chairman, for your kind words. And it's been a long road, but we're here, and with your help.
Just let me say that there's three benefits that are so important for this bill. Number one is that people will get a genetic test. And if it shows that they have a propensity for having some disease, they can then take preventive measures and take measures that are going to improve the quality of their life. And it's personalized medicine. People have got to take command of their medical lives.
Second of all, because people will take preventive measures, this is going to reduce the cost of health care. It's going to reduce the cost to businesses because their employees will be taking these preventive measures, and it's going to reduce the cost to health care providers because people, again, will be taking these measures.
And as I said before, through the clinical trials, it will increase the ability to find cures for so many diseases if people get into these.
So with that, I would really like to take a moment to thank Representative Slaughter, Chairman Slaughter of the Rules Committee one more time, Greg Walden of Oregon who has been a major sponsor of this bill, Congressman Andrews of New Jersey, who has been so helpful, and Mrs. Eshoo from California, who has been so involved. And then Senator Snowe, Senator Kennedy and Senator Enzi for all their hard work on this issue. It's truly been a pleasure to work with all of them.
I would also like to thank Mr. McKeon and Mr. Miller again, the chairman and ranking member of the Education and Labor Committee, for all their support. And then the other chairmen, Congressman Dingell and Congressman Barton of the Energy and Commerce Committee, and Mr. Upton of Michigan for coming down and working on this today. And then Chairman Rangel and ranking member McCrery of the Ways and Means Committee, and then Representative Camp for being the spokesman for them. I applaud them for all their efforts.
I would also like to thank former Speaker Newt Gingrich, who has been so supportive of this legislation. And I would be remiss if I didn't mention Sharon Terry and the Coalition for Genetic Fairness, as well as all of our other organizational supporters, for all their persistence and their expertise on this issue.
And Dr. Francis Collins of NIH for his testimony before all three committees in the House.
Finally, I have to thank the staff, all of the staff, who worked so tirelessly for years now behind the scenes on our behalf and put in long, long hours on this legislation. And in particular, my thanks go to Michelle Varnhagen and Jim Paretti from the Education and Labor Committee staff, and then Michelle Adams from Ms. Slaughter's staff, and Brian Peterson of my staff.
There's so many reasons why everybody should vote for this, and certainly having passed the House by 420-3 last April and the Senate 95-0, you say, This is a no-brainer; why didn't this happen a long time ago? And what's been alluded to is to get three committees in the House of Representatives to work on all of the issues, and they are so technical in how they relate to each other and how it relates to privacy and the other HIPAA and ADA and all of the things that had to be brought in here, I think everyone works so hard just to have a wonderful result. And it's no surprise that we're here, but it just took a long time.
With that, I would urge all my colleagues to vote for this measure.
I yield back the balance of my time.