It can be tough to find a doctor that’s right for you. Everyone has different needs and preferences. If you have hereditary ATTR amyloidosis (hATTR), it may feel even harder to get good care. You’ll need a doctor who understands this rare disease and provides the level of care you want. In fact, you’ll have to find multiple specialists to help you get the best hATTR treatment possible.
What Type of Doctor Treats hATTR?
hATTR is a rare disease that affects multiple organs in your body. This means you’ll likely need to see several specialists such as a heart doctor (cardiologist), blood doctor (hematologist), ophthalmologist (eye doctor), kidney doctor (nephrologist), and brain doctor (neurologist). You may also need to see a digestive tract and liver doctor (gastroenterologist), cancer doctor (oncologist), or genetic counselor.
The type of doctor you see for hATTR can depend on the symptoms you have, the organs affected, and how much damage amyloid buildup has caused. For example, it’s common to have cardiomyopathy if you have hATTR. This condition causes your heart not to pump blood as well, and it can affect your heart rhythm, among other symptoms. You would see a cardiologist for this. On the other hand, if you have tingling and numbness in your legs and feet, you may see a neurologist. Other people with hATTR deal more with stomach pain or weight loss, and need to see a gastroenterologist.
Your hATTR symptoms can depend on the change, or mutation, in your transthyretin (TTR) gene that causes the disease. That can play a role in knowing which doctors you’ll see. Also, as your disease progresses and you have new symptoms, you may need to see more specialists.
How Can I Find a hATTR Specialist?
In order to treat hATTR, you’ll need specialized care. That’s why receiving treatment at a hATTR center is a popular option. At a center, all the specialists are under one roof. Centers are typically at large hospitals. Because hATTR is just one type of amyloidosis, you may want to look for an amyloidosis center. You don’t have to take this route, but there can be advantages. For example, a hATTR center may be doing clinical trials or may be able to connect you with other emerging therapies created by partner centers.
There are a few tools to help you find a specialist for hATTR:
- The National Institutes of Health manages the Genetic and Rare Diseases Information Center, which has several resources online as well as a phone number you can call.
- The National Organization for Rare Disorders (NORD) includes details on finding local specialists.
- The Amyloidosis Research Consortium (ARC) can connect you with local treatment centers and clinical trials.
Will I Still Need My Primary Care Doctor to Treat hATTR?
You’ll still need a primary care doctor if you have hATTR. That doctor probably won’t be at an amyloidosis center. Make sure your primary care doctor and hATTR care team communicate well to share information on your visits and care.
How Can I Coordinate My hATTR Care if I Have Multiple Doctors?
Make sure that all of your doctors are sharing your medical records and updates. Tell your team about any new or worsening symptoms. Attend regular care appointments.
My Amyloidosis Pathfinder can also help. The free tool can help you keep track of all the doctors you see. It’ll also let you browse treatment centers and stay informed on clinical trial opportunities. It’s produced by the ARC.
How Can I Find a Doctor Who Takes My Insurance?
Check with your insurance provider. You may need to pick a doctor from a list of health care professionals that are already in your network. The insurance company may cover all or some of the fee for your visits. Some insurance plans may have out-of-network coverage, which means they may cover some of the care if you choose a doctor outside your network. You can call the insurance company or browse doctors on the insurance company’s website based on the doctor’s specialty.
Next, make sure the doctor takes your insurance. Call the doctor’s office and double-check that they’ll accept your plan. The office may ask for your insurance number or card, so have it handy.
If you don’t have insurance, visit HealthCare.gov to see how to get coverage through the government.
What Should I Look For in a Doctor?
Think about what matters to you. Perhaps you want a doctor that is the same gender as you. You may need someone who speaks your language or is the same ethnicity as you. Some people want a doctor who is involved directly in research, or one who only handles hATTR specifically.
You may prefer to go to an individual doctor, or pick one that’s in a larger practice where you may see whichever doctor is available. Whether or not the office provides telehealth visits may be important to you. The doctor you choose may be based on special certifications the doctor may hold. You may want to choose one that works with a specific hospital or is part of a hATTR center.
Some of those details may be on the doctor’s website, or you can call the office to ask if the doctor offers what you want.
When you find a doctor you like, check to see that they’re taking new patients.
How Can I Find a Doctor Who Will Provide Financial Help?
The doctor may put information about financial assistance on their website. You can also find out what they offer by calling the office directly. If your doctor is part of a hospital, you may find resources from them.
Some groups may not help with copays but can help with medications and other medical needs. For example, NORD offers RareCare Patient Assistance Programs. The PAN Foundation may be able to help cover costs of medication. The Amyloidosis Foundation has a listing of financial resources as well.
How Can I Find the Right Doctor?
You deserve a doctor who listens to your concerns and treats you with respect.
When you have a rare disease, especially one that you could pass to other family members, it’s important that you can understand what the doctor is saying. For example, you should choose a doctor that you like and one who can treat your disease well. You should also pick one that can help you navigate the process of informing family members and potentially having them tested for hATTR as well.
Put some time into finding a good doctor and see how your visit goes. If you aren’t comfortable with the doctor you picked, there are other doctors out there that can meet your needs. Ultimately, a good doctor can be valuable to guide you as you navigate life with hATTR.
Show Sources
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SOURCES:
Amyloidosis Research Consortium: “Hereditary ATTR Amyloidosis,” “Treatment Centers & Clinical Trials,” “My Amyloidosis Pathfinder.”
American Heart Association: “Hereditary Transthyretin-Mediated Amyloidosis (hATTR) Clinical Clues and Diagnostic Testing Quick Reference Guide,” “Genetic Testing and Counseling for hATTR Amyloidosis.”
Cleveland Clinic: “Amyloidosis Center.”
Johns Hopkins Medicine: “Cardiomyopathy,” “Comprehensive Center for Amyloidosis.”
Mayo Clinic: “Amyloidosis.”
Amyloidosis Foundation: “Treatment Centers.”
National Institutes of Health: “Genetic and Rare Diseases Information Center.”
National Organization for Rare Disorders: “NORD Rare Disease Centers of Excellence,” “RareCare Patient Assistance Programs.”
U.S. Department of Health and Human Services: “Choosing a Doctor: Quick Tips.”
PAN Foundation: “How we help.”
