Henrietta Lacks Enhancing Cancer Research Act of 2019
Floor Speech
BREAK IN TRANSCRIPT
Mr. MFUME. Mr. Speaker, I thank the chair of the Energy and Commerce Committee, Mr. Pallone of New Jersey. I appreciate his oversight of this bill and the way his committee has moved us to where we are today.
Mr. Pallone and I go way back. When I left this body some time ago, I didn't know I would come back and he would be chair of the committee, but I couldn't think of a better person.
I also say to Mr. Walden, the ranking member from Oregon, that the body obviously will miss you. And as you heard on both sides of the aisle with the comments that have been made, people have respected your leadership and the leadership that you have brought to that committee both as ranking member and as chair. By the way, let me tell you, there is life after Congress. I went out and found 24 years of it before coming back. So best of everything to you, sir.
Members of the body, if I might, let me just talk a bit about a distinguished, in my opinion, woman whose picture is here beside me. Her name was Henrietta Lacks. She was born 100 years ago in Roanoke, Virginia.
Mrs. Lacks and her husband and her family later moved to Baltimore County in 1941, seeking, as a lot of people did, what they thought were jobs that were available the further north you moved. They moved to an area near what was known as the old Bethlehem Steel Plant. Henrietta and her family lived not far from me and my family in a segregated Black enclave known as Turner Station.
Ironically, Mrs. Lacks got ill. In 1951, as a young mother, she went to the hospital complaining of vaginal bleeding. She went to Johns Hopkins at the time, which was one of the few hospitals that African Americans could go to and be treated.
Upon examination, gynecologists discovered a large, malignant tumor in her cervix. During her treatment there, two cell samples were taken from Mrs. Lacks and from her cervix without her permission and without her knowledge. One sample was healthy tissue, the other sample was cancerous tissue. And these samples were given to a physician and a cancer researcher at Hopkins to study.
What this researcher would soon discover was that Mrs. Lacks' cells were unlike any others he had ever seen. Where other cells would die, Mrs. Lacks' cells doubled every 20 to 24 hours.
This continued after her death.
The cells from the cancerous sample became known eventually as the HeLa immortal cell line.
The HeLa immortal cell line is the oldest and the most commonly used human cell line in scientific research anywhere in the world. The cell line was found to be remarkably durable and prolific, which allows its use extensively in scientific study. This was the first human cell line to prove to be successful in in vitro studies, which was a scientific achievement with profound implications on the future and profound benefits to medical research.
HeLa cells can divide an unlimited number of times in a laboratory cell culture plate as long as fundamental cell survival conditions are met and sustained. There are, as we have come to know over time, many strains of HeLa cells as they continue to mutate in other cell cultures, but all HeLa cells are descended from the same tumor cells once removed from Mrs. Lacks. The total number of HeLa cells that have been propagated in cell culture far exceeds the number of cells that were in her body.
Today, these incredible cells are used to study the effects of toxins, drugs, hormones, and viruses on the growth of cancer cells without having to experiment on humans while that is being done. They have been used to test the effects of a number of different things: radiations, poisons, to study the human genome, and to learn more about how all viruses ultimately work, and they have played a crucial role in the development of the polio vaccine.
When Jonas Salk was so close to getting to what he thought was an effective vaccine, Dr. Salk tested the vaccine against the cells, and the cells directed him to make the vaccine even more potent.
The NIH analyzed and evaluated scientific literature over the course of time involving HeLa cells and found that over 110,000 publications cited the use of those cells from 1953 to 2018. So this analysis, I think, further highlights the persistent impact of HeLa cells in science and in medicine, proving that they have been a consistent and essential tool that has allowed researchers to expand their knowledge base in fields such as cancer biology, infectious disease, and many, many other areas.
There is so much to be said about Ms. Lacks, who died in that same Black, poor enclave many, many years ago, but to her credit and to the credit of all science, her living clearly was not in vain, and her death has proven something that nobody ever anticipated at the time: that there could even be such a cell that would continue to develop and mutate long beyond the donor's ability to live.
BREAK IN TRANSCRIPT
Mr. MFUME. Mr. Speaker, I would inquire how much time remains on my side.
My thanks, again, to the gentleman from Oregon (Mr. Walden) and the others who have spoken on behalf of this, including Congressman Ruppersberger, who has been, as he indicated, a part of this effort for a while.
And that while goes all the way back to the other reason that I am here today, and that is my friend of 42 years and a Member of this body for 23 years, the late Elijah Cummings, who originally introduced this bill before his death, and a commitment that I made to he and to others long ago that, working outside of the Congress, I would be supportive of him.
But now that I am inside, I wanted to make sure that I got unanimous consent from this body, as I did a month or so back, to be able to assume the leadership of this bill, its sponsorship, and to move it forward, and we have been doing all that we could to get to this point.
Again, Mr. Speaker, I would be remiss if I did not thank Mr. Pallone and Mr. Walden for their efforts.
Let me, if I might, just say a couple of things, Mr. Speaker. It has been long recognized that the burden of cancer is not equal and not equivalent among different racial and ethnic groups in our society. In fact, there is a fourfold increase, or disparity, in the number of Black people diagnosed with cancer in this country as compared with the proportion of Black people participating in clinical trials.
The gentleman from Oregon (Mr. Walden) mentioned how sensitive this is right now as we are trying to work with drug companies to come up with a number of vaccines. And whether it was the Pfizer trial or the Moderna trial, one thing is clear: there has never seemed to be enough persons of ethnic backgrounds, particularly African Americans and Latinos, who are participating in these trials.
To underscore this more, let me remind you that 20 percent of Alzheimer's patients in this country are African American, but only 3 to 10 percent are the trial participants in clinical trials.
As I said, COVID is a disease with a roughly twofold higher rate of diagnosis and mortality between African Americans and other populations.
So all of that, in the aggregate, really stresses the need for a more diverse research participatory effort in order to fully understand, comprehensively deal with, and cure these diseases.
Clinical trials are an essential step in advancing potential new cancer treatments. We know that. Patient participation in those trials is absolutely crucial to their success.
Now, many patients will express a willingness to participate in clinical research, yet only a small fraction of those persons do actually do that.
In terms of the larger African-American community, some of the barriers that have existed continue to exist. People can't take time off from their job to participate and be studied in a clinical trial, or, more importantly, there is this level of distrust.
The distrust, particularly among African Americans, goes back to 1932, when our government, through the United States Public Health Service, oversaw and gave authorization for what was to become known as the infamous Tuskegee Study, where 600 Black men, without their knowledge, without their approval or consent, were injected with syphilis and told that they were being treated for something altogether different.
Those 600 men lived and watched their bodies change. Many of them may had reinfected others. They suffered a great deal of pain. And nowhere during that time did the government step in and say, ``Stop it.''
That Tuskegee study, which many of us grew up hearing about, is something that lurks in the minds of a lot of African Americans about why you can't trust the government on research when it comes to your body. The shame that went with that ought to be a collective shame that all of us in this country feel.
We are beyond 1932. People are still getting ill. There are all sorts of infectious diseases. We need vaccines, and we have to find a way now to participate in that process and to find a way to get beyond the things that hold us back.
But in this instance, I just thought it was important to mention why that reluctance tends to exist.
Racial and ethnic groups, and older Americans, rural Americans, and poor Americans, are all the groups that still remain underrepresented in cancer clinical trials. Without action, these groups will continue to face barriers in terms of enrollment in cancer and other clinical trials, which then deprive many Americans from access to effective treatments and effective interventions.
Mr. Speaker, I close by reminding us how we began, and that is with the story, the life, and the lesson of Henrietta Lacks, who died at an early age, a mother of five who came north seeking employment, who developed an illness, who got treated, and who, without her knowledge or consent, had cells taken out of her body that were not cancerous--in addition to the cancerous cells--only to miraculously find that there was something very, very special about Ms. Lacks and her biological makeup: a cell that continued to mutate and to mutate and to double long after it was taken from her body, long after her death, and even now has created 110,000 studies about this miraculous cell, which we call HeLa, that has been the basis of research, Nobel award-winning research, in the years that followed.
My thanks to all of you for participating and for understanding the passion that drove Elijah on this, that drives me on this.
I want to thank the Lacks family, the Henrietta Lacks Foundation.
I want to thank the American Cancer Society, the National Institute of Minority Health and Health Disparities, Research America, and all the other organizations that continue to fight to bring about some sort of balance and equity in the whole issue of research and clinical trials.
BREAK IN TRANSCRIPT
Source