Mr. President, I rise today to introduce the Annual and Lifetime Health Care Limit Elimination Act of 2009, legislation that would prohibit insurance companies from imposing any annual or lifetime limit on any individual or group health…
Mr. President, I rise today to introduce the Annual and Lifetime Health Care Limit Elimination Act of 2009, legislation that would prohibit insurance companies from imposing any annual or lifetime limit on any individual or group health insurance policy, thus providing continuity and affordability of health care coverage for those with serious chronic conditions.
Each year, thousands of insured Americans face daunting medical expenses and challenges when they reach the annual or lifetime limit on their individual or employer-sponsored health insurance plan. Once a beneficiary's medical costs have exceeded the annual or lifetime limit of their plan, the insurance company no longer pays for the medical costs incurred by that individual.
In April, I held a roundtable discussion on health care in Raleigh County. There, I met a woman who had myelodysplastic syndrome, which is a non-curable pre-leukemia type disease. Unfortunately, her husband's insurance policy had a lifetime limit of $300,000, which she had reached. Another young West Virginian, born with serious congenital heart defects, reached the $1 million limit on his mother's insurance policy within the first nine months of his life. The limits on their health insurance plans have left these families struggling to find a way to pay for the expensive and life-sustaining treatments their loved ones desperately need.
Unfortunately, these two West Virginia families are not alone. In 2007, it was estimated that 55 percent of all people who obtain health benefits from their employer have some type of lifetime limit on their plan, an increase of approximately 4 percent since 2004. More than 23 percent of people have health insurance plans that impose limits of $2 million or less. Also, some health insurance policies renew less frequently than annually and contain annual limits to reduce the medical expenses paid by insurance companies. It is estimated that approximately 20,000 to 25,000 people no longer have health care benefits through their employers because of lifetime limits on their employer-sponsored health care plans.
When individuals with serious chronic conditions--such as transplant recipients, patients living with hemophilia, and newborns with life- threatening illnesses--hit the annual or lifetime limits on their policies, they are often left with very few options to meet their health care needs. Individuals and families that can afford it can try to pay for their health care costs completely out-of-pocket. However, this is rarely financially feasible; therefore, many people are forced to leave good, stable jobs and seek different employment in an effort to obtain new employer-sponsored coverage. Unfortunately, new enrollees are often subject to a waiting period for coverage if there was any break in their previous health care coverage.
Should an individual try to find health insurance in the individual market, coverage is likely to be prohibitively expensive. More often then not, these individuals are denied coverage altogether because of the insurer's pre-existing condition exclusion. Annual or lifetime limits can force people to turn to public programs such as Medicaid, or spend down their savings to meet the financial restrictions of the program. Others are forced to forgo treatment altogether, which can lead to serious complications and greater long-term health care costs.
It is time to stop health insurance companies from imposing annual or lifetime limits on health insurance policies. The beneficiaries affected by these limits have paid their premiums, deductibles, and copays faithfully, only to lose access to life-saving treatment when they need care the most. This is unacceptable and I encourage my colleagues to join me in supporting the Annual and Lifetime Health Care Limit Elimination Act.
Mr. President, I ask unanimous consent that the text of the bill be printed in the Record.
Mr. President, I rise today with my friends and colleagues--Senators Collins, Kohl, Wyden and Carper--to introduce the Advance Planning and Compassionate Care Act of 2009, comprehensive legislation that recognizes the critical importance of advance care planning and quality end-of-life care. Senator Collins and I have worked on this legislation for over a decade--with the ultimate goal of one day passing comprehensive end-of-life care legislation. We are encouraged by the prospect of comprehensive health reform this year and believe that it is absolutely critical that end-of-life care provisions be included.
In preparation for the impending health reform debate, Senator Collins and I decided last year that it was time to update our Advance Planning and Compassionate Care Act to incorporate all of the best ideas out there on improving end-of-life care--including new and innovative approaches being implemented in the states, approaches suggested by scholars in this field, and recommendations based on our own experiences with loved ones facing the end of life. This new and improved bill is truly a labor of love and we are certainly hopeful that we can finally get something comprehensive and meaningful done for the millions of individuals and families faced with the agonizing issues surrounding the end of life.
A modern health care delivery system is well within our reach and something that we can start to achieve this year. A critical component of a modernized health system is the ability to address the health care needs of patients across the life-span--especially at the end of life. Death is a serious, personal, and complicated part of the life cycle. Yet, care at the end of life is eventually relevant to everyone. Americans deserve end-of-life care that is effective in providing information about diagnosis and prognosis, integrating appropriate support services, fulfilling individual wishes, and avoiding unnecessary disputes.
The bitter dispute that played out publicly for Terri Schiavo and her family is an agonizing experience that countless other families quietly face over the care of a loved one because clear advance directives are not in place. End-of-life care is a very delicate, yet important, issue and we must act to ensure that all Americans have the dignity and comfort they deserve at the end of life. Services should be available to help patients and their families with the medical, psychological, spiritual, and practical issues surrounding death.
Most people want to discuss advance directives when they are healthy and they want their families involved in the process. Yet, the vast majority of Americans have not completed an advance directive expressing their final wishes. In 2007, RAND conducted a comprehensive review of academic literature relating to end-of-life decision-making. This review found that only 18 to 30 percent of Americans have completed some type of advance directive expressing their end-of-life wishes. RAND also found that acutely ill individuals, for whom these decisions are particularly relevant, complete advance directives at only slightly higher rates--35 percent of dialysis patients and 32 percent of Chronic Obstructive Pulmonary Disease, COPD, patients. Perhaps most alarmingly, between 65 and 76 percent of physicians whose patients had an advance directive were unaware of its existence.
In its present form, end-of-life planning and care for most Americans is perplexing, disjointed, and lacking an active dialogue. In its 1997 report entitled Approaching Death: Improving Care at the End of Life, the Institute of Medicine found several barriers to effective advance planning and end-of-life care that still persist today.
In addition to the substantial burden of suffering experienced by many at the end of life, there are also significant financial consequences for family members and society as a whole that stem from ineffective end-of-life care. According to one Federal evaluation, 80 percent of all deaths occur in hospitals--the most costly setting to deliver care--even though most people would prefer to die at home. Current studies indicate that around 25 percent of all Medicare spending occurs in the last year of life. Largely because of their poorer health status, dually eligible beneficiaries have Medicare costs that are about 1.5 times that of other Medicare beneficiaries. Research also shows significant variation in expenditures at the end-of-life by geography and hospital, without evidence that greater expenditures are associated with better outcomes or satisfaction.
We must find ways to improve the quality of end-of-life care. Quality measures provide not only information for oversight, but data with which to improve care practices and models. No core sets of end-of-life quality measures are required across provider settings. Even for certified hospices, reporting of quality measures has only recently been required, with each hospice deciding its own indicators. Hospice surveys are behind schedule and not conducted frequently enough.
Facilitating greater advance planning and improving care at the end of life also requires an adequate workforce. Unfortunately, there is a substantial shortage of health professionals who specialize in palliative care. There is a severe shortage of physicians and advance practice nurses trained in palliative medicine. Contributing to these shortages is a shortage of medical and nursing school faculty in palliative medicine and care. There is also a lack of content about end-of-life care in medical school curricula. Medical students in general receive very little formal end-of-life education. Almost half of medical residents in a survey felt unprepared to address patients' fears of dying. For Americans to have a full range of choices in end- of-life care, we must strengthen our health care workforce, including palliative care education of physicians and other health professionals.
Care at the end-of-life can, and should, be better and more consistent with what Americans want. The Advance Planning and Compassionate Care Act takes enormous steps forward to fully inform consumers of their treatment options at the end of life and to actually address patient end-of-life care needs when the time comes. To promote advance care planning, this legislation provides both patients and their physicians with the information and tools to help them in this most personal and often difficult discussion.
Last year's Medicare Improvements for Patients and Providers Act, PL 110-275, took a significant step forward toward improving advance care planning. MIPPA included a provision that I authored, requiring physicians to provide an advance care planning consultation as part of the Welcome to Medicare physical exam. Unfortunately, less than 10 percent of new enrollees use the Welcome to Medicare visit. The MIPPA provision also does not address the advance care planning needs of existing Medicare enrollees.
The legislation we are introducing today establishes physician payment under Medicare, Medicaid, and CHIP for vital patient advance care planning conversations. It provides help in documenting decisions from these conversations in the form of advance directives and in the form of actionable orders for life sustaining treatment. It also takes steps to address the problem of accessing advance directives when needed, including state grants for electronic registries.
This legislation establishes a National Geriatric and Palliative Care Service Corps, modeled after the National Health Service Corps, to increase the woefully inadequate supply
of geriatric and palliative specialists and to even out their geographic distribution. It adopts MedPAC's 2009 hospice payment reforms aimed at aligning payment with the actual trajectory of resources expended over hospice episodes of care, while remaining within the constraints of current reimbursement. Demonstration projects are funded to explore ways to better meet the needs of patients over longer time periods than the 6-month prognoses inherent in the hospice benefit.
Certification standards and processes are developed for hospital- based palliative care teams. Such teams are critical to providing consultation and care to dying patients. Quality measurement and oversight are strengthened, with development of end-of-life measures across care settings and greater data reporting requirements of hospices--so that we can make sure the hospice benefit is keeping pace with the changing diagnostic mix of patients that hospice serves.
Finally, this bill takes the important step of establishing a National Center on Palliative and End-of-Life Care within the NIH. This is a vital step toward prioritizing biomedical research in the areas of palliative and end-of-life care. It will also serve as a symbol to remind us that, as in other phases of life, we need care at the end of life that addresses our individual needs and circumstances.
Death is a serious, personal, and complicated issue that is eventually relevant to each and every one of us. Americans deserve end- of-life care that is effective in fulfilling individual wishes, avoiding unnecessary disputes, and, most importantly, providing quality end-of-life care. Therefore, I urge my colleagues to join us in improving end-of-life care and reducing the amount of grief that inevitably comes with losing those who we hold dear.
Mr. President, I ask unanimous consent that the text of the bill be printed in the Record.
Mr. President, today I am pleased to introduce with my distinguished colleague Senator Olympia Snowe, bipartisan legislation known as the State Child Well-Being Research Act of 2009. Companion legislation has already been introduced in the House by Congressmen Fattah and Camp. This bill is designed to enhance child well-being by requiring the Secretary of Health and Human Services to facilitate the collection of state-specific data based on a defined set of indicators. The well-being of children is important to both national and State governments. Therefore, data collection is a priority that cannot be ignored if we hope to make informed decisions on public policy.
In 1996, Congress passed bold legislation, which I supported to dramatically change our welfare system. The driving force behind this reform was to promote the work and self-sufficiency of families and to provide the flexibility to States necessary to achieve these goals. States, which is where most child and family legislation takes place, have used this flexibility to design different programs that work better for the families who rely on them. The design and benefits available under other programs that serve children, ranging from the Children Health Insurance Program, CHIP, to child welfare services, can vary widely among States.
It is obvious that in order for policy makers to evaluate child well- being, we need state-specific data on child well-being to measure the results. Current surveys provide minimal data on some important indicators of child well-being, but insufficient data is available on low-income families, geographic variation, and young children. Additionally, the information is not provided in a timely manner, which impedes legislators' ability to effectively measure child well-being and design effective programs to support our children.
The State Child Well-Being Research Act of 2009 is intended to fill this information gap by collecting up-to-date, State-specific data that can be used by policymakers, researchers, and child advocates to assess the well-being of children. As we strive to promote quality programs, we need basic benchmarks to measure outcomes. Our bill would require that a survey examine the physical and emotional health of children, adequately represent the experiences of families in individual states, be consistent across states, be collected annually, articulate results in easy to understand terms, and focus on low-income children and families. This legislation also establishes an advisory committee, consisting of a panel of experts who specialize in survey methodology and indicators of child well-being, and the application of this data to ensure that the purpose is being achieved.
Further, this bill avoids some of the problems in the current system by making data files easier to use and more readily available to the public. As a result, the information will be more useful for policy- makers managing welfare reform and programs for children and families. Finally, this legislation also offers the potential for the Health and Human Service Department to partner with private charitable foundations, like the Annie E. Casey Foundations, which has already expressed an interest in forming a partnership to provide outreach, support and a guarantee that the data collected would be broadly disseminated. This type of public-private partnership helps to leverage additional resources for children and families and increases the study's impact. Given the tight budget we face, partnerships make sense to meet this essential need.
I hope my colleagues review this legislation carefully and choose to support it so that Federal and state policy makers and advocates have the information necessary to make good decisions for children.
Mr. President, I ask unanimous consent that the text of the bill be printed in the Record.