You may see many different health care providers throughout your life. Many of these will focus on a specific area of medicine. While the hope is that all health care providers will work in close collaboration, this is not always a given. It is important to know how to navigate the healthcare system and advocate for the care your needs.

This section of Navigating the Health Care System covers:

Working With the Hemophilia Treatment Center

Primary Care Providers

Medical Advocacy

Working With the Hemophilia Treatment Center

Many people with blood and bleeding disorders receive their care at a Hemophilia Treatment Center (HTC). At an HTC you can access comprehensive care from a team of interdisciplinary health care providers. These providers specialize in blood and bleeding disorders. Not only are they knowledgeable about treatment options, but they also understand how your blood or bleeding disorder can affect other areas of your body, such as your cardiovascular system, liver, or kidneys.

Sometimes you will need to see additional health care providers who are not part of the HTC team. Your HTC team will advocate for you to access needed services and act as a liaison to make sure you receive appropriate care. It is important that all of your health care providers work together. They are a great resource for navigating the health care system.

How Accessible Is the Hemophilia Treatment Center?

Most HTCs will provide emergency treatment during office hours and have a provider 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. At these educational events you will not only learn about medical issues but also connect with other people with bleeding disorders.

If you want more information about HTCs, please go to Hemophilia Treatment Centers.

Primary Care Providers

Your HTC team will offer you excellent care for your blood or 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. PCPs provide treatment when a general health problem occurs. 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. They have taken and passed a medical specialty examination (board certified) and are qualified to treat the entire family. This physician may have additional training in the areas of obstetrics and gynecology, sports medicine, or psychiatry.
  • A pediatrician who treats children from birth until approximately 18 years of age.
  • An internist is a physician who is qualified in the prevention, diagnosis, and treatment of adult diseases.  They can have subspecialties in treating specific conditions, such as cardiovascular or kidney disease, diabetes, or a certain age group, such as geriatrics.

Choosing a Primary Care Provider

When choosing a PCP, check with your health insurance to make sure they are in your provider network. You can also get recommendations from other people with blood or bleeding disorders in your area, your HTC team, friends, neighbors, and relatives.

Here are some things to think about when choosing a PCP:

  • Is the provider willing to work with your HTC team?
  • Do you feel comfortable with the health care provider? Do you trust the health care provider?
  • Does the health care provider listen to you? Does the health care provider involve you in your own care rather than tell you what to do?
  • How does your health care provider approach treatment? Do you feel comfortable with their approach?
  • Is the office staff helpful? Is it easy to make an appointment?
  • Is the office conveniently located near your home or your work?
  • Do the office hours work with your schedule?

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

 

Medical and Health Specialists

Throughout your lifetime your PCP or HTC team may refer you to another health care provider to address specific issues or concerns.  As medicine becomes more complex 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. The referring provider 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.  Most HTCs operate within a hospital setting and work in partnership with other specialty providers. These specialists may have experience working with your HTC team and people with blood or bleeding disorders.

What kind of specialists might you need to see throughout your lifetime?

You will meet many health care providers throughout your lifetime. These will include physicians, but also allied health professionals, such as physical and occupational therapists, people involved in nursing, psychosocial personnel, such as social workers and psychologists, dentists, pharmacists, and many more. Here we will focus on several medicine specialties you might encounter during this stage of life.

Obstetricians/Gynecologists (OB/GYN)

Many HTCs work closely with trusted OB/GYNs or even one on staff.  OB/GYNs can help manage symptoms in women, girls, and people who have the potential to menstruate. People with bleeding disorders often experience heavy menstrual bleeding (HMB), which can negatively impact their quality of life. However, HMB can be addressed by your health care provider team.

If you would like to have more information about menstrual bleeding, please go to Normal and Abnormal Periods.

You may also be interested in growing your family. If you or your partner would like to become pregnant, you should meet with your HTC team or other hematology care provider, genetic counselor, high-risk OB/GYN, and anesthesiologist. This will ensure that you receive well-coordinated care for a safe pregnancy, delivery, and post-partum period.

If you want more information about becoming pregnant, please go to Pregnancy Options.

Women and people with the potential to menstruate will eventually experience perimenopause and menopause. People starting perimenopause may experience more erratic menstrual bleeding. They are also more likely to develop fibroids, polyps, uterine cancer, and endometrial hyperplasia, which is an overgrowth of the uterine lining. The OB/GYN will also advise on treatment plans to reduce menopausal symptoms, including hormone therapy and lifestyle changes.

If you want more information about this topic, please go to Menopause.

Pain Specialist

These health care providers are often anesthesiologists, who have undergone additional training in managing pain. Many people with bleeding disorders are experiencing acute and chronic pain, even at a young age. Sometimes, a pain specialist can help establish a comprehensive treatment plan to manage your pain and to improve your quality of life. Some HTCs collaborate closely with a pain specialist or even have one on their team. Others will be able to refer you to an appropriate health care provider.

Orthopedic Surgeon

Joint disease (called arthropathy) is very common in people with bleeding disorders due to repetitive joint bleeds. Many HTCs work closely with an orthopedic surgeon or even have one as part of their team. They often work with the physical therapist to correct issues of your musculoskeletal system. They may provide surgical interventions, such as synovectomies surgery to remove the membrane lining the joint), joint replacements, or joint fusions.

Cardiologist

Conditions of the cardiovascular system, such as clogged arteries (called arteriosclerosis), are treated by a cardiologist. The cardiologist should work very closely with your HTC team or other hematology health care provider. Some medications used to prevent a stroke (called cerebrovascular accident), irregular heart rhythm (called arrhythmia), or heart attack (called myocardial infarction) can disrupt blood clotting. By working together, you can get needed medication while also managing your bleeding symptoms appropriately.

Hepatologist

Many people with bleeding disorders are suffering from chronic liver disease resulting from hepatitis C (HCV) infection. To treat issues of the liver you will be referred to a liver specialist, called a hepatologist. While your hematologist can order standard tests to see how well your liver works, a hepatologist is needed to order and assess more in-depth scans and tests. Hepatologists are experts in managing worsening liver disease. They can advise you on liver transplantation in case you are advancing to end-stage liver disease. Your hepatologist should work closely with your hematologist to establish your treatment plan.

Nephrologist

Many people suffer from kidney disease. Human immunodeficiency virus (HIV), high blood pressure (called hypertension), and kidney bleeding contribute to kidney disease. If you are suffering from kidney disease, you will be referred to a kidney specialist, called a nephrologist. They 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. They perform procedures needed to look at the bladder or to break up or remove kidney stones.

Oncologist

People with blood or bleeding disorders can get cancer, just like anybody else. However, those who have been infected with human immunodeficiency virus (HIV) are at a greater risk of developing certain types of cancer. These cancers may include Kaposi sarcoma aggressive B-cell non-Hodgkin lymphoma, and cervical cancer. These are also called acquired immunodeficiency syndrome (AIDS) cancers because they confirm a diagnosis of AIDS.2,3,5 People who have been infected with HIV are also at a higher risk of developing cancers of the anus, liver, oral cavity, lungs, and Hodgkin lymphoma. These are called non-AIDS defining cancers.6

People with blood or bleeding disorders, who have been infected with hepatitis C (HCV) or hepatitis B (HCB), are at a greater risk of developing liver cancer.1,4

Cancer is treated in many ways.  Treatment depends on the type and severity. The specialists who treat cancer are called oncologists. There are 3 different types of oncologists:

  • Medical oncologist. This specialist will oversee general care and oversee chemotherapy, hormone therapy, and immunotherapy. They 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 oncologist should work closely with your HTC team or other hematology health care provider to ensure that your blood or bleeding disorder is taken into consideration. For example, you may need additional medication for your bleeding disorder during invasive procedures, such as biopsies or port placement for chemotherapy.

Medical Advocacy

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

Here are some tips to help you prepare for your visit:

  • 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.
  • Contact your insurance company. Ask for a summary of coverage to ensure what procedures, treatments, and hospital stays will be covered.
  • 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 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.

During your visit:

Your health care provider will need all essential information about your health and well-being. While revealing personal information is not always comfortable, it is nothing to be ashamed of. Health care providers often hear deeply personal information.

Make sure to ask all the questions you have. It is helpful to write these down prior to your visit.

Examples 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 health care providers?

Asking questions is important, especially when you don’t understand something. Otherwise, health care providers will think all their information is clear. You can also ask them to draw a picture to help you understand or provide written instructions. Often medical offices have materials in different formats or languages to help you understand important information.

You can also ask to record part of your conversation with the health care provider. This can be helpful when discussing a treatment plan.

After your visit:

After your visit make sure to review all materials that have been provided to you. If you have recorded part of the visit, listen to the recording. If you have any additional questions, call the health care provider you met with and ask to speak to somebody who can answer your questions. The provider may have suggested for you to receive further testing or to see an additional specialist. If the appointment was not coordinated by the medical office, schedule one with the appropriate office.

Most importantly, keep your HTC team informed and involved in the care you are receiving from other providers.

 

If you want more information about how to best communicate with providers, please go to Talking to your Provider.

References
  1. Arzumanyan, Reis, H. M. G. P. V., & Feitelson, M. A. (2013). Pathogenic mechanisms in HBV- and HCV-associated hepatocellular carcinoma. Nature Reviews. Cancer, 13(2), 123–135. https://doi.org/10.1038/nrc3449
  2. Grulich, van Leeuwen, M. T., Falster, M. O., & Vajdic, C. M. (2007). Incidence of cancers in people with HIV/AIDS compared with immunosuppressed transplant recipients: a meta-analysis. The Lancet (British Edition), 370(9581), 59–67. https://doi.org/10.1016/S0140-6736(07)61050-2
  3. Hernández-Ramírez, Shiels, M. S., Dubrow, R., & Engels, E. A. (2017). Cancer risk in HIV-infected people in the USA from 1996 to 2012: a population-based, registry-linkage study. The Lancet HIV, 4(11), e495–e504. https://doi.org/10.1016/S2352-3018(17)30125-X
  4. Rosen.(2011). Clinical practice. Chronic hepatitis C infection. The New England Journal of Medicine, 364(25), 2429–2438. https://doi.org/10.1056/NEJMcp1006613
  5. Silverberg, Lau, B., Achenbach, C. J., Jing, Y., Althoff, K. N., D’Souza, G., Engels, E. A., Hessol, N. A., Brooks, J. T., Burchell, A. N., Gill, M. J., Goedert, J. J., Hogg, R., Horberg, M. A., Kirk, G. D., Kitahata, M. M., Korthuis, P. T., Mathews, W. C., Mayor, A., … Dubrow, R. (2015). Cumulative Incidence of Cancer Among Persons With HIV in North America: A Cohort Study. Annals of Internal Medicine, 163(7), 507–518. https://doi.org/10.7326/M14-2768
  6. Wang, Silverberg, M. J., & Abrams, D. I. (2014). Non-AIDS-Defining Malignancies in the HIV-Infected Population. Current Infectious Disease Reports, 16(6), 406–406. https://doi.org/10.1007/s11908-014-0406-0