The Patient's Bill of Rights Act and Breast Cancer Care

There has been considerable discussion for the last two years in congress about the need for a special bill designed to protect consumers in the event they experience a serious illness. The following information is a summary of what is currently in place related to this bill which is known as the "Patient's Bill of Rights Act." In this article, you will find information that specifically relates to how this bill impacts breast cancer treatment.

Depending on who you talk to, the two versions of the Patient's Bill of Rights Act now being debated in Congress could provide a plethora of new medical benefits to patients, especially to those without access to high-quality medical care.

In general, both the House and Senate versions of the legislation establish:

• Safeguards for the privacy of patient information
• Consumer assistance programs to help patients negotiate the healthcare system
• Mandatory coverage for emergency services
• Required disclosure of information by insurers regarding benefits and cost-sharing
• The ability of individuals to sue health plans for malpractice
• Non-discrimination in the delivery of health benefits
• Guaranteed and ongoing access to specialists
• Procedures for patients to file appeals and grievances when insurance coverage is denied
• The opportunity to participate in clinical trials when no standard treatment is available

While it seems unlikely that all of these provisions will survive final passage and eventually be signed into law by President Clinton, two provisions are of particular importance to breast cancer patients: Access to Specialty Care (Oncology Care), and Standards for Breast Cancer Treatment.

Access to Specialty Care

Any meaningful Patient's Bill of Rights should include a provision stating that if an individual has an illness of sufficient seriousness and complexity to require treatment by a specialist-such as breast cancer-and benefits for such treatment are provided under the insurance plan, the insurance company must provide for a referral to such a specialist.

Furthermore, this access to specialty care should include:

• Standing referrals for ongoing treatment;
• Nominating the specialist as the primary care provider when an individual has an ongoing serious medical condition; and,
• Providing access to out-of-network providers at no additional cost if an appropriately trained provider is not available in the network.

Standards for Breast Cancer Treatment

Any Patient's Rights legislation should require that health care plans ensure inpatient coverage with respect to the treatment of breast cancer for a period of time as determined by the attending physician rather than the insurance company. The Act should specifically mention coverage for a mastectomy, lumpectomy, or lymph node dissection for the treatment of breast cancer.

Furthermore, the Act should specify that hospital stays and treatments may be shorter if the attending physician and the patient deem it medically appropriate. As can be the case at many advanced medical facilities, certain surgical and treatment procedures can be done more efficiently on an outpatient basis, and often more effectively and in a shorter time frame and with fewer side effects. Therefore, the legislation should allow for flexibility in treatment options and recognition of advanced in treatment practices (as is the case for the Johns Hopkins Breast Center.)

Denials and Appeals

In addition to the above, any meaningful Patient's Bill of Rights Act should state that insurance companies may not deny coverage of routine patient costs for participation in clinical trials for individuals when no standard treatment is available.

Also, should access to specialty care or to an appropriate clinical trial be denied, the legislation should provide for a range of appeals and grievance procedures, including:

• Required written notice of denials with the reason for denial clearly stated and information on appeal rights included in the letter;
• Making oral requests by patients sufficient to trigger appeals;
• Providing a strict timeframe for non-urgent care decisions and expedited review for urgent care decisions;
• Providing for internal reviews of coverage decisions by clinical peers
• Providing for external reviews of coverage decisions by independent decision-makers.

  The bottom line for breast cancer patients? Specialty services such as surgical oncology, medical oncology and radiation oncology care must be guaranteed under any Patients Bill of Rights legislation. ( For example, patients have the right to receive treatment from a surgical oncologist who specializes in breast cancer surgery and a medical oncologist who exclusively sees and treats breast cancer patients.) This would include standing referrals for ongoing cancer treatments; nominating your oncologist as your primary care provider; having costs of clinical trials be covered by your insurance; and allowing both you and your physician to determine the appropriate location and duration of your treatments.

  A Breast Cancer Patient's Bill of Rights

  As a patient who has been diagnosed with breast cancer and is about to undergo treatment, or someone who has now completed treatment for this disease, you have rights- rights that are specific to you and your present medical situation.

  Wherever you choose to receive your treatment and/or follow up care, keep these rights in mind. Ask the health care provider where you are treated how they "measure up" against these the following Breast Cancer Patient's Bill of Rights, which is provided to all patients at the Johns Hopkins Breast Center These rights were developed with direct input from the Johns Hopkins Breast Cancer Survivor Volunteers in recognition that the patient's input is critical to the success of the mission and vision of the Breast Center. Whenever possible, these rights are adhered to because of their importance in helping us fulfill our goals-meeting the special needs of breast cancer patients and making the treatment for breast cancer as least traumatic physically and emotionally as possible. Below is an overview of the Johns Hopkins Breast Cancer Patient's Bill of Rights:

  • Patients who have been advised to see a surgeon due to an abnormal mammogram or breast lump should be seen, whenver possible, within two business days by a physician who specializes in diagnostics for breast cancer diagnosis and treatment.
  • Patients can expect to be evaluated by a multidisciplinary team of health care professionals dedicated to the diagnosis and treatment of women with breast cancer. This team should consist of several surgical oncologists, medical oncologists, radiation oncologists, radiologists, plastic surgeons, pathologists, nurses, social workers/counselors, and rehabilitation therapists, all of whom specialize in breast cancer treatment. This team meets weekly to discuss newly diagnosed patients seen individually by one of the team members and a group discussion regarding the recommendations for treatment are reviewed.
  • Patients should expect to be cared for by physicians who are board certified by the medical profession in the treatment of breast cancer.
  • Patients have the right to receive the best care and treatment possible. This is best provided by a hospital that meets the standards defined by the Approvals Program of the Commission on Cancer of the American College of Surgeons.
  • Patients should have the right to directly participate in the decision making about their care and treatment. They should be treated as an equal partner of the health care team starting at the time of their first appointment for evaluation.
  • Patients have the right to information about their diagnosis and treatment options. The education process should begin at the time of their first appointment for evaluation. Information should be provided verbally and in writing as a means of ensuring effective communication.
  • Patient's family members should be encouraged to take part in supporting the patient, both physically and emotionally. Designated family members chosen by the patient should be encouraged to participate with the patient in educational sessions conducted by the health care staff with the patient.
  • Patients should have the opportunity to participate in clinical trials related to breast cancer treatment and should be provided information about these trials that they qualify for throughout their diagnosis and treatment phases.
  • Patients should expect to be treated by doctors and nurses who can provide state of the art care. They should be given access to state of the art surgical care, medical oncology care, radiological care, and radiation oncology care, rehabilitation and nursing care. To accomplish this the latest technology available must be accessed whenever appropriate and patients should feel assured that the most comprehensive and up to date treatment options will be utilized.
  • Patients should expect to be medically and surgically managed with every effort to prevent or minimize side effects of breast cancer treatment.
  • Patients should to be able to express their opinions openly, freely and be heard. If they have concerns about their care or wish to make recommendations to the staff for improving care or services, their opinion should be taken seriously.
  • Patients have the right to talk with patients previously diagnosed and treated in the Breast Center to obtain answers to candid questions and to receive ongoing emotional support. ( Johns Hopkins Survivors Helping Survivors Program)
  • Patients have the right to expect effective continuity of care, including timely communication between the Breast Center physicians and the patients' referring physicians and other health care providers.
  • Patients can expect urgent care needs to be effectively addressed. Health care professionals are available 24 hours a day, 7 days a week to accomplish this.
  • Patients can expect to have their emotional needs and that of their families personally and individually assessed and supported through interventions made by the physicians, nurses, social workers and counselors.
  • Once a patient has been treated for breast cancer she should have medical management and be followed for the rest of her life. Long-term follow up is considered a standard of care for all patients.
  • Patients should expect to be offered on-going education programs about breast cancer treatments, survivorship issues, new discoveries and the latest in clinical management. These educational offerings should be provided on a continuous basis and patients in treatment as well as those who have completed treatment are encouraged to participate.
  • Patients should expect to be offered resources to help with image recovery, targeted at improving and rebuilding self image and self esteem which may change as a result of breast cancer treatment. The goal is to restore the patient's health status, including their emotional well being.

  For further details about the Johns Hopkins Breast Center's Breast Cancer Patient's Bill of Rights, visit the Breast Center's web site at www.med.jhu.edu/breastcenter [insert hyperlink] or give us a call at 410-614-2853.

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