Insurance and Real Estate Committee
JOINT FAVORABLE REPORT
AN ACT REQUIRING HEALTH INSURANCE COVERAGE FOR BONE MARROW TESTING.
SPONSORS OF BILL:
Insurance and Real Estate Committee
REASONS FOR BILL:
Bone marrow transplant is an effective treatment for more than 70 life threatening diseases, including Non-Hodgkin's Lymphoma, Leukemia and other cancers. In order for a bone marrow transplant to happen, a simple blood test must first be done to find donors with the closest bone marrow match possible, so the patient has the best chance of successful transplant. Some patients never find an appropriate match, and die while waiting on the list for bone marrow transplant.
Increasing the number of people tested and added to the donor list -- and thereby increasing the number of transplant matches found, as well as decreasing the amount of time patients are on the list before transplant -- would reduce the cost of the medical treatment that would otherwise be covered by insurance as medically necessary in lieu of transplantation.
The cost to the potential donor of undergoing bone marrow testing is a significant barrier to expanding participation in bone marrow donation. This bill is needed to reduce this barrier by limiting the out-of-pocket cost to the donor. It will also provide greater access to the opportunity to donate for people of low-income backgrounds, and will thereby increase the number of African-American, Latin-American, and patients of mixed-race able to find matches and receive bone marrow transplants.
The bill would also ensure that bone marrow testing is performed in safe, accredited facilities, and that all results are shared in a secure, national database.
RESPONSE FROM ADMINISTRATION/AGENCY:
The CT Insurance Department submitted testimony respectfully urging members of the legislature to take into account the future financial obligations that may be placed on the State and taxpayers. The federal Patient Protection and Affordable Care Act requires by January 2014 that each State establish an exchange for the purchase of qualified health plans. The Insurance Department states, “Qualified health plans will be required to offer an essential benefits package as determined by the Secretary of Health and Human Services.” The State may require benefits in addition to the essential benefits, but if it does “the State must assume the costs of the additional benefits.” They state in addition, “Essential benefits have yet to be defined by HHS; therefore, there is no mechanism for determining if” the benefits in this bill “will fall within the definition of essential benefits or not.” However, should this bill be passed and these benefits “be determined to exceed the essential benefit requirements, the State will have an immediate financial obligation to pay the cost” in 2014.
Victoria Veltri, Acting State Healthcare Advocate, Office of the Healthcare Advocate submitted testimony stating that this bill provides a positive change in the way health insurance operates. She stated, “Passing this legislation would ensure that cost is less of a barrier to the saving of lives.” Additionally, the bill would require that testing “be performed in an American Society for Histocompatibility facility and that results of such tests be recorded in the National Marrow Donor Program database,” guaranteeing that the test is done in a safe, accredited facility and results are stored in a protected, useful database.
Frank Sykes, African-American Affairs Commission (AAAC), testified in support of a previous version of this bill (SB-290) on February 3, 2009. He stated that a shortage of marrow donors is a major problem for African-Americans suffering from diseases of the blood and immune system. He stated, “Since tissue types are inherited, patients in need of a bone marrow transplant are most likely to match with someone from the same ethnic group.” At the time of his testimony, the most recent available data from the New England Bone Marrow Registry indicated that of over 106,000 people signed up to be donors, a mere 3 percent were African-American. As a result, for people of African decent identifying a match for transplantation, “can be virtually impossible, drastically limiting chances of survival,” he testified. By directing that the cost of bone marrow testing be covered by health insurance it is the commission's hope that this legislation will provide greater access to donation for people of low-income backgrounds and will increase the number of African-American able to receive bone marrow transplant.
NATURE AND SOURCES OF SUPPORT:
Rep. Russell A. Morin, Twenty-Eighth Assembly District, submitted written testimony stating his strong support for this bill. He wrote, “The lack of insurance coverage for the initial test is a deterrent for individuals who would otherwise be willing” to become donors. He stated that therefore, patients who need transplants are faced with finding the resources to pay for the initial tests of potential donors themselves, or with charitable contributions.
He also wrote, “Rhode Island, Massachusetts, and New Hampshire have already passed similar legislation. I believe this legislation could actually save money in the long run if the extraordinary expenses to keep these patients healthy can be eliminated with a successful bone marrow transplant. I have seen firsthand the anguish and despair that someone goes through when they need help finding a bone marrow donor, there just are not enough available donors.”
American Cancer Society (ACS) submitted written testimony stating support for this bill on behalf of patients and donors. Testimony stated the initial blood test for donor matching “can cost the donor between $50 and $100. There are many potential donors that may be deterred from donating due to the cost.” This bill would require insurance companies to pay for the procedure, as they would with any other blood test. “This test is not complicated, and is the same procedure as taking blood to test for many illnesses, presently covered by insurance.” ACS also testified that insurance coverage for cancer treatments, especially for end of life care, can be very expensive. By increasing donors and transplants, there may be a decrease in many end of life care treatment costs that insurance companies are required to pay. Testimony closed by stating, “This bill will not only save lives, but it will also save money.”
Maria D Spencer, Director, Legislative Relations, National Marrow Donor Program (NMDP), submitted written testimony stating that currently, one of the most significant barriers in adding to the registry is the cost of testing for potential donors. She wrote, “On any given day, more than 6,000 men, women and children desperately search the NMDP Registry for a matching bone marrow donor.” These are patients whose only hope for a cure may be a transplant. She stated that her program's goal is to “meet the access needs of virtually all Americans searching for a donor for transplantation, regardless of their racial or ethnic heritage. Since its inception in 1987, NMDP has provided transplants for more than 30,000 cancer patients. In passing this law, Connecticut could join several states (Massachusetts, Missouri, New Hampshire and Rhode Island) that require this insurance.” She also stated that the proposed law “would encourage more donors to join the NMDP Registry increasing the likelihood that more patients will find the match they need.”
Gina C. Gallivan and John P. Gallivan, Wethersfield, CT, testified about their experience looking for a donor when Gina was diagnosed with leukemia in 2005 at age 25, after the couple had been married less than one year. She was not a match with any donor on the registries, so they organized donor drives in both CT and in Massachusetts, where John grew up. All told, they added 500 people to the donor list, about half from each state – but the difference between the drives in CT and those in MA were striking. In MA the testing was covered by insurance but in CT potential donors were required to pay out of pocket. The result was that it cost the couple and their friends more than $12,000 to cover the costs for the potential donors in CT. They see the goal of this bill as a simple one; “to allow those willing to join the registry to do so without the additional burden of having to pay the cost of the test.' Gina stated that she was fortunate to eventually find a match from an anonymous 21 year-old donor to one of the registries. In addition, she stated that at least four of the people involved in donor drives organized by the Gallivans and their friends have been found to be matches for other patients in need, and have been contacted to arrange for transplants.
Robert Greenberger, Darien, CT, submitted written testimony describing his family's experience searching for a donor for his son who needed a bone marrow transplant in 2008. He urges support for this bill in order to expand the pool of donors, and especially to address cost barriers which are “believed to be one reason why African-Americans, Latin Americans, and those of mixed races are woefully underrepresented in the national registry.”
Danny Lemos, Fairfield, CT sent written testimony stating that he was diagnosed with lymphoma in 2005 and was told by his doctor that the best chance for a full cure would be a bone marrow stem cell transplant form an adult donor. He was also told there was only a 25% chance to find a matching family member so he would need to also look for a match on bone marrow registries. His brother and cousins were tested but were not a close enough match, and no one on any registry at the time was a match either. He wrote, “Doctors told me this was very common because there were just not enough people on the bone marrow registries. They told me they were sure there were many perfect bone marrow matches for me out there, but just not enough people register.” He was told with a match he would have about an 80 to 90% chance of curing his cancer with a transplant, but without a match he had about an 80 to 90% chance that this cancer would kill him. He stated that bone marrow drives were organized for him in CT, but very few people came. He wrote that in his case, “It cost about $55.00 to test each person and many people, especially the people that you want on the registry -- men and women between the ages of 18 to 45 -- could not afford to pay for the tests. I thought it was ridiculous that the insurance companies did not cover the cost of these tests. It was like having the Red Cross ask you to donate a pint of blood but charging $55.00 for your trouble. The insurance companies would pay for millions of dollars for drugs each year to keep me alive for a few years but would not cover the $55.00 to help find my cure?” He stated that he and his family began to cover the cost for testing. He wrote, “My out of pocket cost has been in the tens of thousands of dollars. We've gone through all our life's savings and most of our children's college funds. I had to go on disability for a year and it ruined us financially.”
Manuel and Sylvia Meneses, Wethersfield, CT, submitted written testimony urging support for this bill and describing their experience searching for a donor for their daughter who successfully underwent bone marrow transplant from an anonymous donor. They wrote, “We know first-hand the feeling of helplessness, knowing that there are so many good people willing to be tested as possible donors, but the cost deters them from doing so. By supporting this bill you will give hope to thousands of patients and their families. You could not serve your constituents in a more meaningful way.”
NATURE AND SOURCES OF OPPOSITION:
Eric George, Associate Counsel for CT Business and Industry Association, submitted testimony stating that for the business community, the rising cost of health insurance causes some companies to no longer be able to provide coverage for their employees. He stated, “Connecticut's health insurance mandates impact smaller employers in the state to a greater degree than larger employers. When the legislature either creates a new mandate or expands an existing mandate, it is making health insurance less affordable for those small companies that can least afford to shoulder these cost increases.”
CT Association of Health Plans, submitted testimony stating that while the intent is laudable of any mandate under consideration, the cost impact must be weighed, especially in context of the impact of federal health care reform. They stated, “In simple terms, all mandated coverage beyond the required essential benefits (as will be determined by HHS) will be at the State's expense. Those costs may not be delegated to the individual purchaser of insurance or the insurer.”
Reported by: Sheila McCreven
Date: March 7. 2011