Susan G. Komen for the Cure® is working with policymakers to ensure patient access to quality care for all patients, not just those who can afford it. Komen for the Cure is supporting a number of policy initiatives in this area, including patient access to state-of-the-art cancer treatments for Medicare beneficiaries and support for nurse education.
Cancer costs the U.S. $219 billion each year in medical costs and lost productivity. The disease claims more than half a million lives each year and inflicts incalculable physical pain and emotional distress on cancer patients and their families. Sadly, the burden falls disproportionately on our nation’s underserved populations, who lack regular access to cancer screening and treatment services.
Fortunately, there are concrete steps we can take to end this crisis. Increasing our investment in biomedical research will create jobs and provide short-term stimulus the economy needs today, while building the foundation for a healthier more productive workforce in the future. At the same time, we must ensure access to affordable, high-quality health care for all Americans, especially underserved populations and “uninsurable” persons with chronic or pre-existing conditions like cancer.
Breast Cancer EARLY Act (Breast Cancer Education and Awareness Requires Learning Young Act)
In March, Reps. Debbie Wasserman Schultz (D-FL), Sue Myrick (R-NC), Donna Christensen (D-VI) and Rosa DeLauro (D-CT) introduced the Breast Cancer EARLY Act (Education and Awareness Requires Learning Young) in the U.S. House (H.R. 1740). Senators Amy Klobuchar (D-MN) and Olympia Snowe (R-ME) introduced a similar bill in the U.S. Senate (S. 994). The EARLY Act will:
Initiate an evidence-based public education campaign about breast cancer in women under age 45 — with an emphasis on women at higher risk due to their race, ethnicity or genetic heritage.
Educate health care professionals about the risk factors, opportunities for genetic counseling and testing, and unique challenges that face young women diagnosed with breast cancer.
Provide grants to organizations that provide credible health information directed to young women diagnosed with breast cancer.
The EARLY Act authorizes $9 million per year for FY2010 through FY2014 to carry out the awareness and education campaigns and to provide grants to organizations that provide breast health information to young women.
Why do we Need the EARLY Act?
While it is rare, young women under age 45 can and do develop breast cancer. In the U.S. about 10 percent of all breast cancer occurs in women under age 45:
24,000 women in the U.S. under age 45 are expected to be diagnosed with breast cancer this year (including situ breast cancer), and more than 3,000 will die.
Breast cancer is the leading cause of cancer deaths in women under age 40.
The five-year relative survival rate in the U.S. is slightly lower among women diagnosed with breast cancer before age 40 (82 percent) compared to women diagnosed at ages 40 and older (89 percent).
Diagnosing breast cancer in young women can be more difficult because their breast tissue is often more dense than the breast tissue of older women. By the time a lump can be felt in a young woman, it is often large enough and advanced enough to lower her chances of survival. In addition, the cancer may be more aggressive and less responsive to hormone therapies.
There are benefits to starting evidence-based, age-appropriate breast health education early. By starting young, when women are still developing their lifelong habits, educating them about the benefits of healthy living and breast self-awareness will lead to a lifetime of empowerment. And they may be willing to adopt healthy lifestyles including exercise and nutrition.
Komen has a long history of working with younger women who are affected by breast cancer and provides educational materials and resources for younger women diagnosed with breast cancer. Komen strongly encourages every woman to take charge of her life. First, know your risk — learn your family health history and talk to your provider about your personal risk of breast cancer. Second, get screened — ask your health provider which screening tests are right for you. Third, know what is normal for you — know your body and tell your health provider right away if you notice a change in the way your breasts look or feel. Finally, make healthy lifestyle choices. More information is available on www.komen.org.
Breast and Cervical Cancer Prevention and Treatment Act
The Breast and Cervical Cancer Prevention and Treatment Act of 2000 (Treatment Act) gives states, the District of Columbia, tribes and territories the option to extend full Medicaid coverage to women who would otherwise not have health care coverage for treatment of breast or cervical cancer. To qualify, a woman must be uninsured, under age 65, need treatment for breast or cervical cancer, and receive her screening through a state-administered program funded by the Centers for Disease Control and Prevention. Once enrolled in Medicaid, women are eligible to receive full Medicaid coverage for the duration of her cancer treatment.
All 50 states and the District of Columbia — as well as tribal organizations and territories — have adopted this program. However, states have flexibility in how they define whether a woman was screened through the state screening program. States have three screening options.
Option 1: A woman is considered “screened under the program” and is therefore eligible for Medicaid services if NBCCEDP funds pay all or part of the costs of her screening services. 16 states and D.C. have implemented this option.
Option 2: A woman is eligible if her provider receives NBCCEDP funds and the service was within the scope of a grant, sub-grant or contract under that state program — even if the woman’s screening may not have been paid directly from NBCCEDP funds. 15 states have implemented this option.
Option 3: A woman can receive Medicaid services regardless of where she was originally screened, as long as she would otherwise meet the other eligibility requirements. 20 states have adopted this least restrictive and most fair option.
While the Option 1, 2 and 3 terminology is no longer officially used, it is still widely recognized and is a way to classify the state programs.
The Government Accountability Office recently released a report on the Treatment Act, which examined the gaps in access to screening and treatment within states and between states. Read the Komen Advocacy Alliance statement on the GAO report.
Due to severe funding constraints, the NBCCEDP-funded programs reach less than 16 percent of women eligible for breast cancer screening. Thus, four out of five women must be screened outside the program. In Option 1 and Option 2 states, many of these women — who would otherwise be eligible for Medicaid-funded breast and cervical cancer treatment — fall into the Treatment Act gap and do not receive those services. The Susan G. Komen for the Cure Advocacy Alliance is committed to increasing funding for the NBCCEDP at the federal and state levels to ensure more eligible women can receive potentially life-saving screenings.
The Bottom Line: The primary reason for closing the Treatment Act is that, generally, in Option 1 and Option 2 states, a woman may be denied Medicaid-funded medical support for cancer treatment because she was diagnosed at the “wrong” facility — that is, one in which the woman’s screening is not paid all or in part by NBCCEDP. Thus, because of shortages in NBCCEDP funding, or simply because a woman did not know about her state’s screening program, women who would otherwise be eligible for Medicaid services do not receive them — solely because they happened to be screened at a provider that does not participate in the NBCCEDP program.
Women screened outside the NBCCEDP program and therefore ineligible for Medicaid sometimes find other ways to get treatment — charity care or funds from nonprofit organizations like Susan G. Komen for the Cure — with the help of case managers at the state’s NBCCEDP program. However, while some women will obtain some low-cost or free services, finding and negotiating with these services is complex, time consuming and irregular. All states should close the Treatment Act gap so all underserved women diagnosed with breast or cervical cancer will have access Medicaid services regardless where they were screened.
Access to Cancer Clinical Trials Act
The Cancer Clinical Trials Act of 2009 (H.R. 716/S.488) would require group health plans and health insurance providers to cover routine patient care costs for individuals enrolled in clinical trials. The Act would remove a large barrier to patient participation and provide access to many more people. Today, half the states require insurance companies to cover routine care provided as part of a clinical trial. The Komen Advocacy Alliance believes the federal government and other state governments should follow suit. The Komen Advocacy Alliance supports the Access to Cancer Clinical Trials Act of 2009, which is sponsored in the U.S. House by the Co-chairs of the House Cancer Caucus Representatives Steve Israel (D-NY), Sue Myrick (R-NC), and Lois Capps (D-CA) and co-sponsor Rep. Mary Jo Kilroy (D-OH). The bill is sponsored in the U.S. Senate by Senators Sherrod Brown (D-OH), Arlen Specter (R-PA) and Sheldon Whitehouse (D-RI).
Clinical trials help scientists and doctors deliver new scientific discoveries to patients’ bedsides and determine which treatments are effective and safe. Clinical trials are a lifeline for people with life-threatening illnesses like cancer. Each year, thousands of people gain access to the highest-quality cancer care and receive new treatments before they are widely available by participating in a clinical trial. Millions more benefit from the findings. Yet, while more than 1.4 million Americans are diagnosed with cancer each year, fewer than 5 percent will participate in an approved clinical trial.
Patient Navigation Services
Susan G. Komen for the Cure® is committed to ensuring that all breast cancer patients have access to a qualified patient navigator to help guide them through the complicated structure of the American health care system. Through its Affiliates, Komen has funded numerous programs across the country that provide these critical services to breast cancer patients.
Patient navigators are trained, culturally sensitive health care workers who provide support and guidance to breast cancer patients through the cancer care continuum. They help "navigate" the patients through the maze of doctors' offices, clinics, hospitals, outpatient centers, insurance and payment systems, patient-support organizations and other segments of the health care system. For breast cancer patients, a patient navigator can provide personalized education on breast surgery options, chemotherapy and radiation therapy. Navigators can facilitate communication with physicians and other health care professionals.
Patient Navigation Services are critical to address the barriers to quality cancer care, particularly for minority and underserved patients who often do not speak English, have low literacy skills, are uninsured, and/or live long distances from treatment centers. These patients may have difficulty assessing quality care and have trouble coordinating their cancer care. Without patient navigators, these patients experience disjointed treatment, inadequate patient-doctor communication, difficulty with follow-up appointments and poor adherence to treatment regimes.
The Patient Navigator Outreach and Chronic Disease Prevention Act of 2005 (Patient Navigator Act) established a competitive grant program through the Health Resources and Service Administration to provide patient navigators to those in need. In June 2005, the bill passed by a voice vote in the House and by unanimous consent in the Senate. Representatives Robert Menendez (D-NJ) and Deborah Pryce (R-OH) sponsored the bill in the United States House of Representatives and Senators Kay Bailey Hutchison (R-TX) and Jeff Bingaman (D-NM) sponsored the companion bill in the Senate. President Bush signed the bill into law on June 29, 2005. The legislation authorized $25 million over five years to fund the Patient Navigator grant program. However, no funds were appropriated from these critical services until 2008, when Congress appropriated $2.9 million.
Congress should reauthorize the program and appropriate $18.6 million for the Patient Navigator program in FY2010, which includes funds that were authorized — but never appropriated.
Comprehensive Cancer Care Improvement Act
The Susan G. Komen for the Cure Advocacy Alliance supports the "Comprehensive Cancer Care Improvement Act" (H.R. 1844), as we have in previous Congresses. The Act would provide coverage for comprehensive cancer care planning services within Medicare and will make strides toward a cancer care system that coordinates all levels of care. The bill was introduced by Representatives Lois Capps (D-CA) and Charles Boustany (R-LA).
Cancer patients should have a coordinated plan for treatment and follow-up from the time they are diagnosed through the years of their survivorship. A written cancer plan and the opportunity to review it in person with their doctor will better enable cancer patients to understand the process ahead, monitor their own health, and participate in decisions about their care. Further, a written plan will help coordinate care among a patient’s many doctors and providers, reduce medical errors, and ultimately improve patient care.
Assuring and Improving Cancer Treatment Education and Cancer Symptom Management Act
The Susan G. Komen for the Cure Advocacy Alliance supports the "Assuring and Improving Cancer Treatment Education and Cancer Symptom Management Act" (H.R. 1927), which was introduced by Reps. Steve Israel (D-NY) and Patrick Tiberi (R-OH). The Act provides Medicare coverage for comprehensive cancer patient treatment education services and funds research to improve cancer symptom management.
Breast Cancer Patient Protection Act
The Susan G. Komen for the Cure Advocacy Alliance supports the “Breast Cancer Patient Protection Act of 2009” (H.R. 1691/S. 688), which would amend the Employee Retirement Income Security Act of 1974 to require coverage for a minimum hospital stay for mastectomies, lumpectomies, and lymph node dissections for the treatment of breast cancer and coverage for secondary consultations. The bill was introduced by introduced by Representatives Rosa DeLauro (D-CT) and Joe Barton (R-TX) in the U.S. House and Senators Mary Landrieu (D-LA) and Olympia Snowe (R-ME) in the U.S. Senate.
Decisions concerning a patient’s care, including the length of a hospital stay subsequent to mastectomy, lumpectomy or lymph node dissection for the treatment of breast cancer, should be made jointly by the patient and her doctor — not by her insurance company. We are committed to ensuring all Americans have access to affordable, high-quality health care, and we encourage patients to talk with their doctors about all treatment decisions, including the length of any hospital stay.
Representative DeLauro first introduced in the 104th Congress, in 1996, and has reintroduced the bill in successive Congresses since then. The U.S. House passed the bill in late 2008, but it was not brought up for a vote in the Senate and thus did not become law. The bill was reintroduced in the 111th Congress in March 2009 with 204 original cosponsors and the list grows by the day.
Nurse Reinvestment Act
Oncology nurses play a vital role in the delivery of quality care for patients with breast cancer and other forms of cancer. These dedicated professionals are involved in the administration of chemotherapy and supportive medications, patient education, health promotion, pain and symptom management, psychosocial care, survivorship, end-of-life care and other essential services. However, our nation currently faces a critical shortage of qualified nurses and inadequate numbers of nursing school faculty to train the next generation of nurses. In the field of oncology nursing, this is particularly critical, given the aging of our population.
The Nurse Reinvestment Act, designed to address current and expected nursing shortages, was signed into law on August 1, 2002. The law includes several important initiatives to ensure an adequate nursing workforce well into the 21st century:
A scholarship program for nursing students who agree to work in a shortage area for at least two years after completing their degree;
Grants to develop and implement programs to train nurses who provide geriatric care;
Student loan funds for Masters or Doctoral students who agree to serve as full-time nursing faculty after completion of their degree
Komen supports continuing the progress being made in addressing our nation's nursing workforce shortage. In effort to continue educating and training additional nurses for the healthcare workforce of the future, Komen is urging Congress to increase levels of funding as appropriate for the Nurse Reinvestment Act programs.
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