Access to Investigational Drugs: Questions and Answers
If you have been diagnosed with cancer, finding a doctor and treatment facility for your cancer care is an important step to getting the best treatment possible. Although the health care system is complex, resources are available to guide you in finding a doctor, getting a second opinion, and choosing a treatment facility. Below are suggestions and information resources to help you with these important decisions.
Physician Training and Credentials
When choosing a doctor for your cancer care, you may find it helpful to know some of the terms used to describe a doctor’s training and credentials. Most physicians who treat people with cancer are medical doctors. The basic training for a physician includes 4 years of premedical education at a college or university, 4 years of medical school to earn an M.D. degree, and a residency consisting of 3 to 7 years of postgraduate education and training. Physicians must pass an exam to become licensed to practice medicine in their State. Each State or Territory has its own procedures and general standards for licensing physicians.
Specialists are physicians who have completed their residency training in a specific area, such as internal medicine. Independent specialty boards certify physicians after they have fulfilled certain requirements. These requirements include meeting specific education and training criteria, being licensed to practice medicine, and passing an examination given by the specialty board. Doctors who have met all of the requirements are given the status of “Diplomate” and are board-certified as specialists. Doctors who are “board-eligible” have obtained the required education and training, but have not completed the specialty board examination.
After being trained and certified as a specialist, a physician may choose to become a subspecialist. A subspecialist has at least 1 additional year of full-time education in a particular area of a specialty. This training is designed to increase the physician’s expertise in a specific field. Specialists can be board-certified in their subspecialty as well.
The following are some specialties and subspecialties that pertain to cancer treatment:
- Medical Oncology is a subspecialty of internal medicine. Doctors who specialize in internal medicine treat a wide range of medical problems. Medical oncologists treat cancer and manage the patient’s course of treatment. A medical oncologist may also consult with other physicians about the patient’s care or refer the patient to other specialists.
- Hematology is a subspecialty of internal medicine. Hematologists focus on diseases of the blood and related tissues, including the bone marrow, spleen, and lymph nodes.
- Radiation Oncology is a subspecialty of radiology. Radiology is the use of x-rays and other forms of radiation to diagnose and treat disease. Radiation oncologists specialize in the use of radiation to treat cancer.
- Surgery is a specialty that pertains to the treatment of disease by surgical operation. General surgeons perform operations on almost any area of the body. Physicians can also choose to specialize in a certain type of surgery; for example, thoracic surgeons are specialists who perform operations specifically in the chest area, including the lungs and the esophagus.
Information about other specialties that treat cancer is available from the American Board of Medical Specialties® in a booklet called Which Medical Specialist For You? This publication is available at http://www.abms.org/which.asp on the Internet. It can also be obtained by writing to: American Board of Medical Specialties, Suite 404, 1007 Church Street, Evanston, IL 60201–5913.
Almost all board-certified specialists are members of their medical specialty society. Physicians can attain Fellowship status in a specialty society, such as the American College of Surgeons, if they demonstrate outstanding achievement in their profession. Criteria for Fellowship status may include the number of years of membership in the specialty society, years practicing in the specialty, and professional recognition by peers.
Finding a Doctor
One way to find a doctor who specializes in cancer care is to ask for a referral from your primary care physician. You may know a specialist yourself, or through the experience of a family member, coworker, or friend.
The following resources may also be able to provide you with names of doctors who specialize in treating specific diseases or conditions. However, these resources may not have information about the quality of care that the doctors provide.
- Your local hospital or its patient referral service may be able to provide you with a list of specialists who practice at that hospital.
- Your nearest National Cancer Institute-designated cancer center can provide information about doctors who practice at that center. The NCI fact sheet The National Cancer Institute Cancer Centers Program describes and gives contact information, including Web sites, for NCI-designated cancer centers around the country. Many of the cancer centers’ Web sites have searchable directories of physicians who practice at each facility. The NCI’s fact sheet is available at http://cis.nci.nih.gov/fact/1_2.htm on the Internet, or by calling the Cancer Information Service at 1–800–4–CANCER.
- The American Board of Medical Specialties has a list of doctors who have met certain education and training requirements and have passed specialty examinations. The Official ABMS Directory of Board Certified Medical Specialists lists doctors’ names along with their specialty and their educational background. The directory is available in most public libraries. Also, ABMS offers this information on the Internet at http://www.abms.org.
- The American Medical Association Physician Select database at http://dbapps.ama-assn.org/aps/amahg.htm on the Internet provides basic information on licensed physicians in the United States. Users can search for physicians by name or by medical specialty. This service is not available by telephone.
- The American Society of Clinical Oncologists provides an online list of doctors who are members of ASCO. The member database has the names and affiliations of over 15,000 oncologists worldwide. It can be searched by doctor’s name, institution’s name, location, and/or type of board certification. This service is at http://www.asco.org/ac/1,1003,_12-002215,00.asp on the Internet.
- The American College of Surgeons Membership Database is an online list of surgeons who are members of the ACS. The list can be searched by doctor’s name, geographic location, or medical specialty. This service is located at http://web.facs.org/acsdir/default_public.cfm on the Internet. The ACS can be contacted at 633 North Saint Clair Street, Chicago, IL 60611–3211, or by telephone at 312–202–5000.
- Local medical societies may maintain lists of doctors in each specialty.
- Public and medical libraries may have print directories of doctors’ names, listed geographically by specialty.
- Your local Yellow Pages or Yellow Book may have doctors listed by specialty under “Physicians.”
The Agency for Healthcare Research and Quality offers Your Guide to Choosing Quality Health Care, which has information for consumers on choosing a health plan, a doctor, a hospital, or a long-term care provider. The Guide includes suggestions and checklists that you can use to determine which doctor or hospital is best for you. This resource is available at http://www.ahrq.gov/consumer/qntool.htm on the Internet. You can also order the Guide by calling the AHRQ Publications Clearinghouse at 1–800–358–9295.
If you are a member of a health insurance plan, your choice may be limited to doctors who participate in your plan. Your insurance company can provide you with a list of participating primary care doctors and specialists. It is important to ask your insurance company if the doctor you choose is accepting new patients through your health plan. You also have the option of seeing a doctor outside your health plan and paying the costs yourself. If you have a choice of health insurance plans, you may first wish to consider which doctor or doctors you would like to use, then choose a plan that includes your chosen physician.
If you are using a Federal or state health insurance program such as Medicare or Medicaid, you may want to ask the doctor about accepting patients who use these programs.
You will have many factors to consider when choosing a doctor. To make an informed decision, you may wish to speak with several doctors before choosing one. When you meet with each doctor, you might want to consider the following:
- Does the doctor have the education and training to meet my needs?
- Does the doctor use the hospital that I have chosen?
- Does the doctor listen to me and treat me with respect?
- Does the doctor explain things clearly and encourage me to ask questions?
- What are the doctor’s office hours?
- Who covers for the doctor when he or she is unavailable? Will that person have access to my medical records?
- How long does it take to get an appointment with the doctor?
If you are choosing a surgeon, you may wish to ask additional questions about the surgeon’s background and experience with specific procedures. These questions may include:
- Is the surgeon board-certified?
- Has the surgeon been evaluated by a national professional association of surgeons, such as the American College of Surgeons?
- At which treatment facility or facilities does the surgeon practice?
- How often does the surgeon perform the type of surgery I need?
- How many of these procedures has the surgeon performed? What was the success rate?
It is important for you to feel comfortable with the specialist that you choose because you will be working closely with that person to make decisions about your cancer treatment. Trust your own observations and feelings when deciding on a doctor for your medical care.
Other health professionals and support services may also be important during cancer treatment. The NCI fact sheet Your Health Care Team: Your Doctor Is Only the Beginning has information about these providers and services, and how to locate them. This fact sheet is located at http://cis.nci.nih.gov/fact/8_10.htm on the Internet, or can be obtained by calling the CIS at 1–800–4–CANCER.
Getting a Second Opinion
Once you receive your doctor’s opinion about the diagnosis and treatment plan, you may want to get another doctor’s advice before you begin treatment. This is known as getting a second opinion. You can do this by asking another specialist to review all of the materials related to your case. A second opinion can confirm or suggest modifications to your doctor’s proposed treatment plan, provide reassurance that you have explored all of your options, and answer any questions you may have.
Getting a second opinion is done frequently, and most physicians welcome another doctor’s views. In fact, your doctor may be able to recommend a specialist for this consultation. However, some people find it uncomfortable to request a second opinion. When discussing this issue with your doctor, it may be helpful to express satisfaction with your doctor’s decision and care, and mention that you want your decision about treatment to be as thoroughly informed as possible. You may also wish to bring a family member along for support when asking for a second opinion. It is best to involve your doctor in the process of getting a second opinion, because your doctor will need to make your medical records available to the specialist.
Some health care plans require a second opinion, particularly if a doctor recommends surgery. Other health care plans will pay for a second opinion if the patient requests it. If your plan does not cover a second opinion, you can still obtain one if you are willing to cover the cost.
If your doctor is unable to recommend a specialist for a second opinion, or if you prefer to choose one on your own, the following resources can help:
- Many of the resources listed above for finding a doctor can also help you find a specialist for a consultation.
- The Pediatric Oncology Branch of the NCI’s Center for Cancer Research is dedicated to providing the best medical care possible to children, teenagers, and young adults with cancer or HIV disease. The Pediatric Oncology Branch offers a second opinion service to physicians, patients, and their families. Their Web site is located at http://home.ccr.cancer.gov/oncology/pediatric/ on the Internet. To request a second opinion from the Pediatric Oncology Branch, you or your physician may call 1–877–624–4878 or 301–496–4256 Monday to Friday, between 8:30 a.m. and 5:00 p.m., Eastern time.
- The Neuro-Oncology Branch is a joint program of the NCI and the National Institute of Neurological Disorders and Stroke. This Branch is dedicated to the treatment of adults and children with brain tumors. Staff can provide a second opinion for doctors, patients, and family members who are interested in this service. Specialists can either evaluate the patient in person or review the patient’s medical records and scans. To find out more about this service, and what information is needed, contact the Neuro-Oncology Branch at 301–402–6298. The Branch’s Web site can be found at http://home.ccr.cancer.gov/nob/default.asp on the Internet.
- The R. A. Bloch Cancer Foundation, Inc., can refer cancer patients to institutions that are willing to provide multidisciplinary second opinions. A list of these institutions is available at http://www.blochcancer.org/articles/xtrnew.asp on the Internet. You can also contact the R. A. Bloch Cancer Foundation, Inc., by telephone at 816–932–8453 or 1–800–433–0464.
Finding a Treatment Facility
Choosing a treatment facility is another important consideration for getting the best medical care possible. Although you may not be able to choose which hospital treats you in an emergency, you can choose a facility for scheduled and ongoing care. If you have already found a doctor for your cancer treatment, you may need to choose a facility based on where your doctor practices. Your doctor may be able to recommend a facility that provides quality care to meet your needs. You may wish to ask the following questions when considering a treatment facility:
- Has the facility had experience and success in treating my condition?
- Has the facility been rated by state, consumer, or other groups for its quality of care?
- How does the facility check on and work to improve its quality of care?
- Has the facility been approved by a nationally recognized accrediting body, such as the American College of Surgeons and/or the Joint Commission on Accredited Healthcare Organizations?
- Does the facility explain patients’ rights and responsibilities? Are copies of this information available to patients?
- Does the treatment facility offer support services, such as social workers and resources to help me find financial assistance if I need it?
- Is the facility conveniently located?
If you are a member of a health insurance plan, your choice of treatment facilities may be limited to those that participate in your plan. Your insurance company can provide you with a list of approved facilities. Although the costs of cancer treatment can be very high, you have the option of paying out-of-pocket if you want to use a treatment facility that is not covered by your insurance plan. If you are considering paying for treatment yourself, you may wish to discuss the possible costs with your doctor beforehand. You may also want to speak with the person who does the billing for the treatment facility. In some instances, nurses and social workers can provide you with more information about coverage, eligibility, and insurance issues. The following resources may help you find a hospital or treatment facility for your care:
- The NCI fact sheet The National Cancer Institute Cancer Centers Program describes and gives contact information for NCI-designated cancer centers around the country.
- The ACS accredits cancer programs at hospitals and other treatment facilities. More than 1,400 programs in the United States have been designated by the ACS as Approved Cancer Programs. The ACS Web site offers a searchable database of these programs at http://web.facs.org/cpm/default.htm on the Internet. The ACS can be contacted at 633 North Saint Clair Street, Chicago, IL 60611–3211; or by telephone at 312–202–5000.
- The JCAHO is an independent, not-for-profit organization that evaluates and accredits health care organizations and programs in the United States. It also offers information for the general public about choosing a treatment facility. The JCAHO Web site is located at http://www.jcaho.org on the Internet. The JCAHO is located at One Renaissance Boulevard, Oakbrook Terrace, IL 60181–4294. The telephone number is 630–792–5800.
The JCAHO offers an online Quality Check service that patients can use to determine whether a specific facility has been accredited by the JCAHO and view the organization’s performance reports. This service is located at http://www.jcaho.org/qualitycheck/directry/SearchConsumerByType.aspx on the Internet.
- The AHRQ publication Your Guide to Choosing Quality Health Care has suggestions and checklists for choosing the treatment facility that is right for you.
Finding a Treatment Facility
If you live outside the United States, facilities that offer cancer treatment may be located in or near your country. Cancer information services are available in many countries to provide information and answer questions about cancer; they may also be able to help you find a cancer treatment facility close to where you live. A list of these cancer information services is available on the International Cancer Information Service Group’s Web site at http://www.icisg.org/meet_memberslist.htm#full on the Internet, or may be requested by writing to the NCI Public Inquiries Office, Cancer Information Service, Room 3036A, 6116 Executive Boulevard, MSC 8322, Bethesda, MD 20892–8322, USA. The ICISG is an independent international organization composed of cancer information services. Their mission is to provide high-quality cancer information services and resources to those concerned or affected by cancer throughout the world.
The International Union Against Cancer is another resource for people living outside the United States who want to find a cancer treatment facility. The UICC consists of international cancer-related organizations devoted to the worldwide fight against cancer. UICC membership includes research facilities and treatment centers, and in some countries, ministries of health. Other members include volunteer cancer leagues, associations, and societies. These organizations serve as resources for the public and may have helpful information about cancer and treatment facilities. To find a resource in or near your country, contact the UICC at:
International Union Against Cancer
3, rue du Conseil General
Telephone: + 41 22 809 18 11
Web site: http://www.uicc.org
Some people living outside the United States may wish to have their cancer treatment in this country. Many facilities in the United States treat international cancer patients. These facilities may also provide support services, such as language interpretation, assistance with travel, and guidance in finding accommodations near the treatment facility for patients and their families.
If you live outside the United States and would like to obtain cancer treatment in this country, you should contact cancer treatment facilities directly to find out whether they have an international patient office. The NCI fact sheet The National Cancer Institute Cancer Centers Program offers contact information for NCI-designated cancer centers throughout the United States. This fact sheet is located at http://cis.nci.nih.gov/fact/1_2.htm on the Internet, or can be obtained by calling the CIS at 1–800–4–CANCER or by writing to the NCI Public Inquiries Office, Cancer Information Service, Room 3036A, 6116 Executive Boulevard, MSC 8322, Bethesda, MD 20892–8322, USA.
Citizens of other countries who are planning to travel to the United States for cancer treatment generally must first obtain a nonimmigrant visa for medical treatment from the U.S. Embassy or Consulate in their home country. Visa applicants must demonstrate that the purpose of their trip is to enter the United States for medical treatment; that they plan to remain for a specific, limited period; that they have funds to cover expenses in the United States; that they have a residence and social and economic ties outside the United States; and that they intend to return to their home country.
To determine the specific fees and documentation required for the nonimmigrant visa and to learn more about the application process, contact the U.S. Embassy or Consulate in your home country. A list of links to the Web sites of U.S. Embassies and Consulates worldwide can be found at http://travel.state.gov/visa/questions_embassy.html or http://usembassy.state.gov on the Internet. The requirements for a nonimmigrant visa for medical treatment may include the following:
- Documentation from a local doctor stating the diagnosis and explaining why treatment in the United States is necessary;
- A letter from a doctor or medical facility in the United States expressing willingness to treat the specific disease and giving details about the proposed treatment and the approximate length and cost of treatment;
- Statement of financial responsibility from the people or organization that will pay for your transportation, treatment, and living costs during your stay in the United States;
- A valid passport;
- One 2-inch square photograph of each applicant;
- A completed Nonimmigrant Visa Application, Form DS–156; and
- A US$100 visa application processing fee, which is nonrefundable.
Additionally, depending on your home country, your age, and other factors, you may also need the following:
- A completed Supplemental Nonimmigrant Visa Application, Form DS–157; and
- A visa issuance fee, if applicable.
More information about nonimmigrant visa services is available on the U.S. Department of State’s Web site at http://travel.state.gov/visa/tempvisitors.html on the Internet.