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Navigating the Health Care System

In this age of breakthrough research, better treatments, and quality comprehensive care at Hemophilia Treatment Centers (HTCs), people with bleeding disorders are living longer lives. With advancing age comes the necessity to address specific age-related health conditions outside of the bleeding disorder. This means you will be meeting with other health care providers in addition to your regular bleeding disorder health team. How will you navigate this new system?

This section will provide helpful information on the roles and responsibilities of the various health care providers you may encounter and information on how to best advocate for yourself during your medical visits.

This section of The Basics of Bleeding Disorders covers:

Working With the Hemophilia Treatment Center

The importance of visiting an HTC for an annual visit should not be underestimated. The comprehensive care model at these centers has a proven record for improving health and reducing costs by lowering rates of emergency department visits, hospital stays, unemployment, and illness-related time off from work. A Centers for Disease Control and Prevention (CDC) study found that the rate of hospital stays for bleeding-related events among individuals whose care is managed at an HTC was 40% lower than the rates for those treated in other care facilities. Additionally, individuals with hemophilia cared for in HTCs are 40% less likely than those treated elsewhere to die of hemophilia-related complications.

Your HTC team has intimate knowledge of your bleeding disorder and how it may affect other age-related health conditions such as cardiovascular disease, cancer, joint disease, liver disease, and kidney (called renal) disease. Your hematologist and nurse are familiar with current research studies and new trends in treatment options. They understand how medications will interact with your bleeding disorder and will know all the proper steps to take to prepare you for procedures such as a colonoscopy, biopsy, and surgery. In addition, they may perform routine screenings such as monitoring thyroid levels and checking for vitamin D deficiency. They may also check to be sure your immunizations are up-to-date.

Your hemophilia treatment team will advocate for you when obtaining other services. They will act as the liaison with your other physicians and specialists, providing information on how procedures and tests should be done for a patient with a bleeding disorder. Often, they will address a potential age-related health problem and point you in the right direction for referral to a specialist. The social worker will advocate for you in addressing issues such as applying for Social Security disability, assessing physical limitations and living environments, and offering psychosocial support. The physical therapist can address ways to improve joint function, decrease falls, and pain management using multimodal therapy. Instead of medication, they may recommend topical nonsteroidal medication, physical therapy, or transcutaneous electrical nerve stimulation (TENS) that blocks pain signals.

How Accessible Is the Hemophilia Treatment Center?

Most HTCs will provide emergency treatment during office hours and have a physician on call 24 hours a day in case of an emergency. Some HTCs have outreach clinics that travel to rural or isolated areas to provide care for people who cannot travel to the main center. They also have educational events throughout the year on topics such as dental care, where you not only learn about medical issues but also socialize with other people with bleeding disorders.

To contact a center near you to learn about their services, go to Hemophilia Center Quick Finder.

Visiting the HTC every year for a comprehensive evaluation is very important, but it’s also recommended that people with bleeding disorders have a primary care provider (family practitioner, internist, or nurse practitioner). It is essential that all other providers coordinate and collaborate with the HTC.

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Primary Care Providers

Your hematologist and medical team will offer you excellent care for your bleeding disorder, but it’s also important to have a primary care provider (PCP) for all your other routine medical needs. A PCP provides preventive care and basic diagnoses of common illnesses and medical conditions. As opposed to a specialist, a PCP is trained to examine your overall health status and to provide diagnosis when a general health problem occurs. In other words, if you see a PCP for a complaint of heartburn, your symptom will be assessed, any further necessary testing will be performed, and you’ll be referred to a specialist for treatment of any identified health conditions. A PCP will also educate you on safe health behaviors, self-care skills, treatment options, screening tests, and immunizations.

Who Qualifies as a Primary Care Provider?

Only the following specialties are considered PCPs:

  • A family practice or general practice physician or nurse practitioner who has taken and passed a medical specialty examination (board certified) and qualified to treat the entire family. This physician may have training in the areas of obstetrics and gynecology, pediatrics, internal medicine, or psychiatry
  • A pediatrician who treats children from birth until approximately 18 years of age. While this is not an option for you as an adult, your children—or perhaps grandchildren—can access pediatricians as their PCP
  • An internist is a physician who is qualified in the prevention, diagnosis, and treatment of adult diseases. Internists are skilled in solving diagnostic problems in addition to promoting prevention measures in areas such as women’s health and substance abuse. They can have subspecialties in treating specific conditions, such as cardiovascular or kidney disease, diabetes, or a particular age group such as geriatrics

Choosing a Primary Care Provider

When choosing a PCP, check with your insurance carrier to see who is on their list of providers. You can also get recommendations from other people with bleeding disorders in your area, your hemophilia treatment team, friends, neighbors, and relatives.

Here are some other considerations when choosing a PCP:

  • Is the provider willing to work with your hemophilia treatment team?
  • Do you feel comfortable with the provider? Do you trust the provider?
  • Does the provider listen to you? Does the provider involve you in your own care rather than tell you what to do?
  • Does the provider have an aggressive or a conservative approach to treatment? Which do you prefer?
  • Is the office staff helpful? Is it easy to make an appointment?
  • Is the office conveniently located near your home?
  • Do the office hours work with your schedule?

When choosing a PCP or working with your current one, be sure your doctor is willing to coordinate care with your HTC team.

Medical and Health Specialists

As you grow older, you may need specialty care for more complex health issues. In such cases, your PCP or hemophilia treatment team will refer you to a doctor who has advanced education and training in dealing with certain health conditions. As medicine becomes more complex and technologically sophisticated, you will benefit from seeing a specialist who is up-to-date on all the latest medical developments.

How Do You Choose a Specialist?

Many specialists will not see you unless you have been referred by your health care provider, which may be your hematologist or PCP. In many cases, insurance companies will not pay for a specialist’s care if you have not first received a referral. You want that referral to come from the health care provider who knows your history, has been working with you throughout the years, and who will work collaboratively with the specialist and provide important information regarding bleeding disorders. Most HTCs operate within a hospital setting and work in partnership with other specialty providers who may have experience consulting with your treatment center team about individuals with bleeding disorders.

What Kind of Specialist Might You Need to See in the Years Ahead?

Whether you are 26, 56, or 86 your body is aging, and because of that you may encounter various conditions that people with hemophilia may have that will need attention from a specialist. A few of these are cancer, cardiovascular disease, joint disease, liver disease, and kidney (called renal) disease.

  • Joint Disease
    • Joint disease is very common in people with bleeding disorders. If you are suffering from joint disease, you may see an orthopedist. An orthopedist diagnoses and corrects functional abnormalities of the muscles, joints, and ligaments. Some HTCs have orthopedists on staff. They can coordinate with your physical therapist and others on the treatment team for interventions such as the use of pain medications; splints and casts; assistive devices; physical therapy; and a synovectomy, which is the removal of an inflamed membrane that lines a joint. The orthopedist, in collaboration with your treatment team, can also perform joint replacements
  • Liver Disease
    • If you are suffering from chronic liver disease resulting from hepatitis C (HCV) infection, you will be referred to a liver specialist, called a hepatologist. While your hematologist can order standard liver function tests, a hepatologist is needed to order and assess more in-depth scans and tests. Hepatologists are experts in managing worsening liver disease and will be able to advise you on liver transplantation in case of disease advancement to end-stage liver disease. Your hepatologist should work closely with your hematologist to establish your treatment plan
  • Kidney Disease
    • A CDC study found that older people with hemophilia have a 50-fold increased risk of dying from kidney (called renal) disease. Contributing factors to this increased risk are human immunodeficiency virus (HIV), high blood pressure (called hypertension), and kidney bleeding. If you are suffering from kidney disease, you will be referred to a kidney specialist, called a nephrologist, who will diagnose and closely manage the condition. Nephrologists can also perform dialysis and advise on kidney transplant procedures in the case of advanced disease. If you have kidney stones or urinary tract bleeding you may also see a urologist, who performs procedures such as those needed to look at the bladder or to break up or remove kidney stones
  • Cardiovascular Disease
    • If you have clogged arteries (called arteriosclerosis) or other serious medical complications with your heart, you will see a cardiologist. Other conditions related to your heart such as high blood pressure (called hypertension) may be treated initially by your PCP, but if your medical condition persists or worsens you may be referred to a cardiologist for more extensive treatment
    • The hemophilia treatment team should coordinate with the cardiologist when considering diagnosis and treatment options. For instance, a person with joint disease might not be able to take the standard heart stress test on the treadmill, so the HTC physical therapist or nurse might recommend an alternative type of test that does not impact the joints. In addition, drugs prescribed to treat and prevent a stroke, irregular heart rhythm (called arrhythmia), or heart attack (called myocardial infarction) could disrupt blood clotting. The hemophilia treatment team will make sure any drug prescribed is appropriate and properly managed given the bleeding disorder
  • Cancer
    • As with the general population, cancer is a concern as a person ages. For men, colon cancer is a concern for those older than age 50 years. For people with bleeding disorders who are infected with human immunodeficiency virus (HIV), there is a greater risk of developing certain types of cancer, in particular, non-Hodgkin lymphoma, basal cell cancer, and Kaposi sarcoma. Those with hepatitis C (HCV) or active hepatitis B, infectious diseases which primarily affect the liver, are more susceptible to hepatocellular carcinoma, a type of liver cancer
    • Cancer is treated in many different ways. The specialists who treat cancer are called oncologists. Some oncologists specialize even further. There are 3 different types of oncologists:
      • Medical oncologist. This specialist will oversee general care and be in charge of chemotherapy, hormone therapy, and immunotherapy, and will also maintain ongoing checkups
      • Radiation oncologist. This specialist will oversee any necessary radiation therapy
      • Surgical oncologist. This specialist will treat cancer by removing tumors or other cancerous tissue
    • Your hematologist should collaborate with these doctors to ensure that your bleeding disorder is taken into consideration during treatment. For instance, the HTC team will provide appropriate factor treatment regimens for invasive procedures, such as biopsies and chemotherapy port placement
  • Obstetricians/Gynecologists
    • Whether a woman is considering a pregnancy or is experiencing perimenopause or menopause, your HTC team and obstetricians/gynecologists should work together to assist with any questions or complications you may have
    • Pregnancy. Prior to conception, women with a bleeding disorder should meet with their hematologist and a genetic counselor, as well as a high-risk obstetrician and anesthesiologist, to determine factor level, carrier status, and what to expect from prenatal and postpartum care. They will discuss blood products and medications taken during pregnancy and any potential risk to the baby’s health, bleeding during pregnancy and after delivery, and the use of epidural anesthesia or other types of pain relievers during delivery. It is very important that the HTC team, along with specialists in high-risk obstetrics, are coordinating care and working together throughout the pregnancy
    • Menopause. Women with a bleeding disorder experiencing perimenopause or menopause should seek out a gynecologist who is familiar with bleeding disorders. As women enter perimenopause, they may experience more erratic menstrual bleeding and are also more predisposed to developing fibroids; polyps; uterine cancer; and endometrial hyperplasia, which is an overgrowth of the uterine lining. All of these conditions can cause heavy bleeding. The gynecologist will advise on treatment plans to reduce menopausal symptoms and bleeding, including hormone therapy and lifestyle change

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Medical Advocacy

Remember to always advocate for yourself and speak up during medical appointments, whether you’re meeting with your hematologist or seeing a specialist for the first time. You can do this by preparing ahead of time.

Here are some tips to help you gain the most out of your doctor visits:

  • Write down key personal information or bring your medical records with you
  • Make a list of all the medications you’re taking, including any vitamins or supplements
  • Write down any symptoms, even symptoms that might seem unrelated to the purpose of your visit
  • Bring a friend or family member with you to the appointment. They can act as moral support or fill in any information you may have forgotten
  • Depending on the appointment, ask in advance if there are any pre-appointment restrictions such as fasting
  • Write down questions to ask the doctor and record the answers for later reference. Example of questions you might ask are:
    • What type of condition do I have? What stage is it in?
    • What are the results of my tests and can I have a copy of them?
    • What other tests will I need?
    • What are the treatment options?
    • What are the side effects of the treatment?
    • Will the treatment affect my daily living activities?
    • Do you have any resources I can look at for further information? Does the office or hospital have a resource center?
    • Are you willing to coordinate my treatment and all procedures with my medical team including my PCP, HTC team, and other specialists?
    • Can I receive a copy of letters being sent to other physicians?

Before your appointment, find out all you can about the purpose of your visit and the type of provider you are seeing. Ask your trusted health care providers for more information or talk to someone else who has gone through a similar experience, whether it’s a colonoscopy or a cardiac stress test. Contact your insurance company and ask for a summary of coverage to ensure what procedures, treatments, and hospital stays will be covered. Most importantly, keep your HTC team informed and involved in the care you are receiving from other practitioners.