To stay healthy as you get older, find yourself an expert, a healthcare gatekeeper. That’s what hematologist Patrick F. Fogarty, MD, calls primary care providers (PCPs). All adults with bleeding disorders need to have a PCP, he says. “Not only do they provide connections to specialists and a variety of services that patients may require, but also very important things happen in primary care visits,” says Fogarty. He directs the Penn Comprehensive Hemophilia and Thrombosis Program at the University of Pennsylvania Medical Center in Philadelphia.
PCPs keep track of your blood pressure and cholesterol levels. They screen for heart disease, cancer, diabetes and other chronic conditions. And they also provide referrals, as needed, to such specialists as cardiologists, endocrinologists and rheumatologists. “People develop illnesses associated with advancing age, which are best managed by someone other than a hematologist,” says Marion A. Koerper, MD, a pediatric hematologist at the University of California, San Francisco. She is also the National Hemophilia Foundation’s medical advisor.
It’s important to find someone local and convenient, especially if you live far from your hemophilia treatment center (HTC), says Koerper. In addition to specialists, PCPs can connect you to other healthcare providers. Further, they can admit you to the hospital, if necessary. “Your PCP is the MD who is on the spot to assess you,” says Koerper.
Your primary care provider should be a family physician, general practitioner or internist. It may take time to select a doctor you like and trust, but it’s time well spent. During your first couple of visits, interview the physician. Fogarty recommends asking yourself a few questions about your experience:
- Does the doctor give you sufficient time and attention during your appointments?
- Is the doctor open to your questions, when asked?
- Does the office staff address your concerns in a timely manner?
- Is the doctor board certified?
- What hospital is the doctor affiliated with?
- Is the doctor in your insurance network?
If you answer no to any of these questions, try a different doctor. “The role of the primary care physician is so important that patients really need to make sure that the fit is good,” says Fogarty.
Your decision will also depend on how the doctor approaches your bleeding disorder, something that most physicians know little about. “At most, hemophilia is covered in a one-hour lecture during medical school,” says Koerper. “And someone who has not specialized in hematology will not be aware of all the management issues involved, such as what kind of clotting factor and how much you may require.” That lack of knowledge need not be a great concern. Just be certain that any potential PCP understands that it’s vital to communicate and consult with your HTC. “When you interview a primary care physician, you have to make it clear that your HTC must have a lot of input into your care,” says Koerper.
Some common procedures will require coordination with your HTC team. For example, your doctor will recommend that you undergo a colonoscopy every 10 years, starting at age 50, to check for polyps, tumors and other abnormalities. The procedure can cause bleeding. “Colonoscopies usually require clotting factor treatment beforehand,” says Fogarty. “That kind of pre-emptive treatment should be coordinated by your HTC.”
Further, your HTC must be consulted whenever your doctor orders a biopsy, because bleeding may occur during and after the procedure, warns Koerper. Most often done to test for cancer, biopsies involve a needle or blade, which is used to remove a tissue sample for lab analysis.
Advocating for yourself
Fogarty’s patients carry a wallet card that describes the factor treatment they need before major or minor procedures. Your HTC may be able to prepare a similar card for you. “It’s not comprehensive, but it at least starts the discussion,” says Fogarty.
Tell your new doctor of any special needs that you have. If you are concerned about a new medication or treatment you’ve been prescribed, check with the experts at your HTC. “That’s what they are there for,” says Fogarty. “Be your own advocate.”
Also, inform your new doctor up front about any other health problems that need to be managed. If you have hepatitis C, ask if he or she works with a local hepatologist (liver specialist) who can monitor your blood counts. For HIV treatment, check to be sure your doctor knows a good infectious disease specialist and is willing to coordinate your care. “Many of the questions you need to ask a potential PCP will depend on what other health conditions you have,” says Koerper.
Ask your HTC for recommendations on PCPs. Your relationship with your new doctor will be an essential and ongoing part of your care. “As patients with hemophilia age, we want the voice of their primary care physician to be as important in their assessment as the voice of their hemophilia treatment providers,” says Fogarty.