Mr. President, I ask unanimous consent that the order for the quorum call be rescinded. Mr. President, I ask unanimous consent I be permitted to speak as in morning business. Mr. President, I rise to talk about a very important health…
Mr. President, I ask unanimous consent that the order for the quorum call be rescinded.
Mr. President, I ask unanimous consent I be permitted to speak as in morning business.
Mr. President, I rise to talk about a very important health issue--sickle cell disease--that highlights the tremendous progress the scientific community has made over the years. This is a timely opportunity to bring up sickle cell disease because this month marks the 100th anniversary of its discovery.
On November 16 and 17, the National Institutes of Health will host a research symposium on sickle cell disease to commemorate the accomplishments of scientists and clinicians over the past century. The symposium, named after the scientist who discovered the gene, Dr. James B. Herrick, will bring to Maryland more than 30
experts from around the world to discuss sickle cell disease research and treatment.
Sickle cell disease is an inherited blood disorder in which red blood cells contain an abnormal type of hemoglobin and frequently take on a sickle, or crescent, shape. These defective blood cells can block small blood vessels, which can in turn lead to tissue damage or stroke. A common complication of this condition is severe pain in the limbs, chest, abdomen, and back. Other complications are anemia, jaundice, severe infection, and spleen, liver, and kidney damage.
The life expectancy for sickle cell patients is shortened, with studies reporting an average life expectancy of 42 years for males and 48 years for females. Sickle cell disease occurs most commonly in people of African descent, though individuals of Middle Eastern, Mediterranean, Central and South American, and Asian Indian heritage can inherit the disease as well. About 1 in 12 African Americans carries the gene for sickle cell disease, and 1 in 400 Americans has the full-blown disease. It is estimated that over 80,000 Americans have sickle cell disease, with about 2,000 babies born with the disease each year.
Sickle cell disease can result in tremendous personal difficulties. Natasha Thomas is a 36-year-old African-American woman from Baltimore, MD. She considers herself fortunate to have access to quality care. Despite some setbacks, she was able to complete middle school, high school, and college, and she has been working consistently for 15 years. She has had employers who have allowed her to take leave when she has had sickle cell pain crises. Natasha admits that most of the people she knows with sickle cell disease are not as fortunate as she is.
Even though she has access to specialized care, Natasha is hospitalized at least once a year with paralyzing pain from the occlusion of her blood vessels with sickle cells. In the hospital, she has to undergo IV therapy with fluids and narcotic pain medicine. Natasha is grateful for the Maryland medical assistance program, which has provided her with the necessary resources to get through difficult financial times when her condition flares up. She admits that if she did not have coverage for specialized care, she would have likely had many more pain flares and may have had to receive blood transfusions.
Sickle cell disease is not a new phenomenon. People have been living with the disease for literally thousands of years. But in the last century, there have been remarkable advancements in diagnosis and treatment of sickle cell disease.
In 1910, Dr. James B. Herrick, an attending physician at Presbyterian Hospital and professor of medicine at Rush Medical College in Chicago, published an article on the case of an anemic West Indian patient. Herrick's clinical and laboratory findings of the patient's ``peculiar elongated and sickle-shaped'' red blood corpuscles represent the first description of sickle cell disease in Western medical literature.
Since the discovery of the mutation responsible for sickle cell disease in the 1950s, there has been a rapid expansion of technological and policy advances.
In 1975, the first statewide newborn screening was established in New York.
In 1986, penicillin was found to be effective as a preventive strategy against pneumococcal infection, a particularly dangerous infection for people with sickle cell disease.
In 1995, the first effective drug treatment for adults with severe sickle cell anemia was reported in a multicenter National Heart, Lung, and Blood Institute study, including a team led by physicians from Johns Hopkins. The anticancer drug hydroxyurea was found to reduce the frequency of painful crises, and patients taking the drug needed fewer blood transfusions.
In 1996, bone marrow transplantation was discovered to improve the course of sickle cell disease for select patients. A year later, blood transfusions were found to help prevent stroke in patients.
At the turn of the millennium, the introduction of pneumococcal vaccine revolutionized the prevention of lethal infections in children and adults with sickle cell disease.
And in 2001, the first mouse model was developed demonstrating the usefulness of genetic therapy for sickle cell disease.
More recently, in 2007, scientists from the University of Alabama Birmingham and the Massachusetts Institute of Technology developed an animal model for curing sickle cell disease. These scientists used skin stem cells to reprogram the bone marrow of mice to produce normal, healthy blood cells.
I am proud to say that other scientists from Maryland have played an important role in advancing sickle cell disease research. Dr. Morton Goldberg, former head of the Wilmer Eye Institute in Baltimore, is considered the world's foremost expert in the diagnosis and treatment of eye disease due to sickle cell disease. Drs. Jim Casella and Robert Brodsky, both from Johns Hopkins, have made great strides toward preventing strokes in young children and searching for cures through stem cell transplants, respectively.
Improvements in sickle cell disease treatments have led to an increase in life expectancy from 14 years in 1973 to the mid to late 40s now. Innovation continues. As of October 2010, there were 240 ongoing or recently completed NIH-funded trials exploring better diagnosis or treatment of the disease. Under the leadership of its Director, Dr. Francis Collins, the NIH is poised to continue to push the envelope of scientific innovations toward finding a cure for sickle cell disease.
Despite all of these technological advances, sickle cell disease remains a significant problem. The annual cost of medical care for the nearly 80,000 individuals with sickle cell disease in the United States exceeds $1.1 billion. The average cost of care per month per patient is nearly $2,000. Studies show that for an average patient with sickle cell disease reaching age 45, the total health care costs are estimated to reach $950,000. What is worrisome is that additional costs associated with reduced quality of life, uncompensated care, lost productivity, and premature mortality push the costs well beyond $1 million per patient.
The enormous human and financial cost of this disease underscores the importance of finding a safe cure for sickle cell disease. A worrying finding in research is that conscious or unconscious racial bias adversely affects the availability of resources for research, delivery of care, and improvement of that care. I am particularly concerned because there is a significant gap in funding for more publicized but less prevalent diseases as compared to sickle cell disease.
This gap in funding was first addressed in 1970 by Dr. Robert Scott when he published landmark articles in the New England Journal of Medicine and the Journal of the American Medical Association. Dr. Scott's articles spurred congressional hearings that led to the passage of the first major legislation concerning sickle cell disease treatment, the National Sickle Cell Disease Control Act of 1972.
Since passage of that act, the number of research grants for sickle cell disease has risen by a factor of 10. Despite increased research dollars for sickle cell disease and major advances in treatment, important gaps still exist in the equity of Federal funding allocation and in the provision of highly qualified clinical care. The disparity in funding sickle cell disease in the private sector is even more pronounced than it is in the Federal Government.
But solely funding additional research is not enough. We need to be sure that the tools we develop for improving patients' lives are available to everyone who needs them. Unfortunately, that is not currently the case.
For example, there is a sixteenfold mortality rate difference between States with the highest and lowest death rates due to sickle cell disease. In other words, depending on where you live, you may be 16 times more likely to die from sickle cell disease in one State than another. I am proud to say that interventions such as mandatory newborn screening developed by Dr. Susan Panny at the Maryland Department of Health and Mental Hygiene have helped Maryland attain the lowest child mortality rate due to sickle cell disease in the Nation, with 1/10 the number of deaths compared to the national average.
Earlier, I mentioned Natasha Thomas. She is fortunate to have access to specialized treatment centers and rarely gets hospitalized for pain crises.
She's been able to maintain a job and says that she has a pretty good quality of life. She is a testament to the benefits of having access to necessary treatments in Baltimore.
Natasha has a friend who is not so lucky. He wished to remain anonymous. Natasha's friend can't keep a job because he is frequently absent from work due to hospitalizations from pain crises.
His condition is poorly controlled because he does not have access to specialized care as does Natasha. Like so many others with sickle cell disease, he is in catastrophic debt from medical bills due to his condition. The difference between Natasha and her friend does not have to be a matter of luck. High quality treatments for sickle cell disease exist. We just need to make sure they are available to everyone that requires them.
Besides our moral obligation to ensure that patients receive appropriate care, there is also an economic argument. Research showing the high proportion of sickle cell disease costs associated with inpatient hospitalization suggest that interventions that reduce complications such as pain crises could be cost-saving.
We have made significant progress toward broadening coverage for all Americans. But the U.S. Department of Health and Human Services must ensure that the implementation of health policy as it pertains to sickle cell disease is done with emphasis on high-quality, equitable care. We need to make sure the standard of care is available to all and that the guidelines permeate throughout the specialty and primary care centers caring for patients with sickle cell disease.
We need to make sure that patients like Natasha's friend can get the care they need. After all, of the nearly $112 billion spent annually on hospitalization for sickle cell disease, a significant portion can be reduced by lowering the complications resulting from hospitalization if excellent care is uniformly provided.
With the recent codification of the Office of Minority Health at the Department of Health and Human Services, we can ensure that our investment in producing new knowledge is balanced by a similarly robust commitment to universal and equitable diffusion of this knowledge. This way, all patients will reap the full benefit of our investment in research. In addition to sickle cell disease, the Office of Minority Health will help us address many other issues pertaining to health disparities.
Health disparities in our health care delivery system are a huge issue. Health disparities are differences in health among social, economic, and racial or ethnic lines. Many disparities exist in our country. Let's look at disparity through the lens of life expectancy.
The life expectancy for African Americans is 5.3 years lower than Whites. Education also affects life expectancy. Individuals with college education can expect to live on average 6 years longer than people who have never graduated from high school. The life expectancy of people over 400 percent of the Federal poverty level is on average 7 years longer than those at or below the Federal poverty level.
These differences are stark, and we need to have a strategy to deal with them. We need to know how we can reach out to the minority communities to deal with their special needs. In addition to codifying the Office of Minority Health, the recently enacted health care reform bill supports a network of minority health offices located within HHS, and it elevated the National Center on Minority Health and Health Disparities at NIH from a center to an institute. The Offices of Minority Health will be essential for addressing health disparities in America by monitoring health status, health care trends, and quality of care among minority patients and evaluating the success of minority health programs and initiatives.
Over the next year I plan to return to the Senate floor to highlight how we as a nation and the Office of Minority Health in particular can tackle health disparities. Through a series of presentations, I hope to raise awareness about the major health disparity issues in our country, and I hope to direct our attention to the proper implementation of the Affordable Care Act so the full potential of this legislation can be realized.
I am proud of the progress we have made with the health care reform legislation. I am proud of the creation of the Office of Minority Health, and on this 100th anniversary of the discovery of sickle cell disease, I commend the scientific and medical communities for their contributions to diagnosis and treatment of this important condition.
Mr. President, I yield the floor and suggest the absence of a quorum.