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For other articles and previous issues click here. May 20, 2002 PROACTIVE,
PRODUCTIVE, AND PROGRESSIVE— According to Kay Gebhard, CTR, the legislative committee chair for the National Cancer Registrars Association (NCRA), Sen Dianne Feinstein (D-Calif.) introduced a new comprehensive cancer bill in February designed to help transform cancer from a terminal illness into a fully treatable disease—100% of the time. Gebhard says, “The legislation grew out of Sen Feinstein’s work as the cochair of the Senate Cancer Coalition and vice-chair of the National Dialogue on Cancer. When it became clear that it was necessary to update the National Cancer Act and develop a new battle plan, the National Cancer Legislative Advisory Committee was then created by Dr. John Seffrin, CEO of the American Cancer Society, and Dr. Vincent DeVita, director of the Yale Cancer Center. The committee brings together the foremost experts on cancer.” Gebhard’s report on the proposed bill (available in its entirety on the NCRA Web site at www.ncra-usa.org) also notes its major provisions, which are as follows: • Increase the percentage of National Cancer Institute research grants approved from 28% to 40% over five years. This includes a 15% increase in the National Cancer Institute’s (NCI) 2003 budget. • Provide $100 million a year for five years in grants and other incentives to take that basic research from the laboratory and bring it into hospital rooms and clinics. There are approximately 400 new drugs held up in the development process because the resources are not available to fund clinical research to test them. In fact, only 5% of adult cancer patients (vs. 60% of children) are currently enrolled in clinical trials. The bill also requires that private and public insurance programs cover the routine costs of clinical trials. • Increase the number of cancer
researchers. Every year, young physicians and researchers avoid
the field of cancer research because they can make more money in
other fields of medicine. This provision seeks to stem that trend
by the following: • Encourage production of “Orphan Drugs” by providing tax and marketing incentives to encourage pharmaceutical companies to produce these or other such drugs targeted to small patient populations. • Provide patients with a “cancer quarterback.” This requires public and private health insurance plans to pay doctors, preferably oncologists, to become the overall managers of patient care, in effect to become a “cancer quarterback.” • Require FDA regulation of tobacco. This provides meaningful regulation of the content of tobacco products by the FDA and their marketing to children. • Create new preventive measures. Prevention and early detection can save lives and money. The bill will accomplish this by the
following: • Providing $250 million for the Center for Disease Control’s (CDC) Breast and Cervical Cancer Screening Program for low-income women. • Providing $50 million to create a demonstration program to expand the CDC’s program to include screening for colorectal cancer. Other provisions allow for a $65 million
contribution to the CDC to do the following: Legislative changes have been made on the state level as well. Texas Gov Rick Perry recently signed into law a bill that requires dentists, doctors, outpatient surgical centers, and outpatient clinics, in addition to hospitals and cancer treatment centers, to report their cancer data to a central cancer registry. In the past, only hospitals and cancer treatment centers were required by law to report cancer cases, thereby diminishing the completeness of cancer data collected in Texas. Nancy Weiss, MPH, PhD, the director of the Texas Cancer Registry, says, “A recent legislative change in Texas (effective September 1, 2001) was the passage of Senate Bill 285, which amended the Texas Cancer Incidence Reporting Act to require cancer case reporting by healthcare practitioners in addition to healthcare facilities and clinical laboratories. Efforts are underway to identify and implement cost-effective and least burdensome methodologies for the reporting of physician and other healthcare practitioner cases, which have not been reported elsewhere.” Weiss commends the state government’s efforts. “This is a positive step for the Texas Cancer Registry to gain more complete case ascertainment for cancers of the cervix and prostate, cutaneous melanoma, and chronic leukemias, as well as multiple myeloma, many of which may be solely diagnosed or treated in a physician’s office.” She adds, “The reporting of all cancer types will allow us to better assess the magnitude of the cancer problem in Texas, to meet national standards for cancer registry data, and to compare our data with that from other states and the nation.” This new legislation has a profound effect on the way cancer data are collected and the amount of effort it takes for a cancer registrar to accomplish this task. “Cancer registrars are being forced to make a decision in their lives—to either come out of their familiar, safe cocoon or dry up on the branch and be replaced,” says Kathy Tinney, CTR, a cancer registry consultant based in San Angelo, Tex. “Cancer registrars must become proactive to fulfill the reporting requirements arising. Many hospitals are associated with physician clinics. I feel it is the cancer registrar’s obligation, due to the knowledge in this field, to apprise the administrations of both facilities of the changes in the reporting laws and how these changes may effect both facilities.” The cancer registry is expanding, and those who are willing to accept the new challenges will find themselves on the forefront of a progressive journey. “A variety of factors will arise with this new requirement, and although this move is very needful to obtain accurate statistics, many aspects of this new change will not be pleasant,” says Tinney. She continues: “First and foremost, where will the financial responsibility lie? Physicians who have worked with the cancer registrar in the past will assume this will just be a new part of their duties. After all, they have the knowledge and the experience to accomplish the task. Why would a physician want to hire and train someone to collect those few added cases? In their minds, they could easily send the information to the cancer registrar to combine with the hospital’s registry, therefore making the information in the registry even better. Although I agree with this thought process in theory, I understand fully why the hospital would not want the added expense of extra staff … to fulfill the physicians’ reporting requirement. “Second, but very important, will be accurate case-finding,” she adds. “Those cancer registrars in an American College of Surgeons approved program will be those that are most likely asked to perform this service. The hospital will agree—for a fee, I’m sure—to collect those cases and add them to the existing database. For those programs, it would be great to have the added data. Studies for your communities could be so much more accurate. However, I fear most facilities will not want this added responsibility. Unless they are on the same computer system as the reporting hospital, even the task of finding the reportable cases could be daunting.” Tinney also advises, “Cancer registrars need to be ready for the questions that will arise. Administrations will expect you to supply this information, and rightfully so. Plan ahead. The information you supply will be the deciding factor. Make sure you include either a salary increase or extra staff.” A few of the questions cancer registrars
can expect to be asked are the following: “As a consultant, I see great opportunities ahead for cancer registrars,” says Tinney. “There will be physician’s offices that will collect their own cases and report them. The smart move for them would be to contract with a certified cancer registrar to ensure that the case-finding is accurate and the data submitted to the Texas Cancer Registry is of the quality and depth that is required. All of this could be done with little or no work from the already busy physician’s office staff.” The future holds many things for cancer registry professionals. Weiss says, “Beginning in 2003, some changes are proposed for the coding scheme used to report the cancer’s stage of disease at diagnosis. This data tells us whether the cancer is being detected early in the course of the disease when the chance of survival is good or at a later stage when survival rates are poor.” Remaining proactive, productive, and progressive is essential for today’s cancer registrar. It is through these steps that the highest level of professionalism can be achieved and the quality of data necessary to aid in the enhancement of cancer research will be attained. — Pamela Harvey Bates is a cancer registrar and freelance writer based in San Angelo, Tex. |
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