Getting a Second Opinion on Your Hemophilia Care

Living with hemophilia means making a lot of decisions about your care, often for years at a time. Sometimes you want another experienced doctor to look at the whole picture with you. That is what a second opinion is for.

Dr. Joe Moleski, Hemo-Health's physician, lives with hemophilia himself. This article explains when a hemophilia second opinion makes sense, what a review looks at, what to bring, and how it can be done by telehealth. A second opinion adds to your care team. It does not replace your hemophilia treatment center (HTC) or your hematologist.

When does a second opinion make sense?

These are some common times people ask for a second look:

• You still have bleeds on your current plan. Hemophilia can cause repeated bleeding into joints, which can lead to long-term joint disease and pain [1][2]. If bleeds keep happening, it is worth asking why.
• You have new or worsening joint pain, swelling or stiffness. Joint bleeding can cause swelling and pain or tightness in the joint [1].
• You have surgery, dental work or another procedure coming up. Bleeding after injuries or surgery is a key feature of hemophilia [1], so this is a good time for questions.
• You have been told you have an inhibitor, or your treatment seems to work less well. About 1 in 5 people with hemophilia A and about 3 in 100 with hemophilia B develop inhibitors (CDC, 2024) [2]. Inhibitors make bleeds harder to treat, and people who have them often have more joint problems [1][3].
• You were recently diagnosed, or a family member was, and you want to understand the diagnosis and the options. Our guide to hemophilia types and severity levels is a good place to start.
• You have questions about newer treatment options. Hemophilia treatment has changed a lot (see below).
• You are a woman or a carrier with bleeding symptoms. Females can have hemophilia, and some carriers have symptoms [1]. Women with bleeding disorders often wait a long time for a diagnosis: one study of women with von Willebrand disease, summarized by CDC, found an average delay of 16 years from first symptoms [6]. If your questions about your bleeding feel unanswered, a second look is reasonable.

Will my hematologist or HTC mind?

Many people worry about this. The short answer: getting a second opinion is a normal part of medical care. It is your right as a patient, and doctors are usually happy to help arrange one [7].

Good care teams want you to feel sure about your plan. NBDF's experts describe choosing hemophilia treatment as an individual decision, and one speaker put it this way: "It is not a decision you need to make alone" [5].

We see our role as a partner to your current team, not a replacement. Ongoing care coordination with your hematologist and HTC is part of a Hemo-Health second-opinion review.

A simple way to bring it up: "I'd like another doctor to review my plan so I feel confident about it. Can you help me send my records?"

Is my current treatment still the right fit?

Treatment for hemophilia has more options than it did even a few years ago. In general terms, they fall into a few groups:

• Factor replacement. The standard way to treat hemophilia A and B is to replace the missing clotting factor [3]. Standard half-life products are used for hemophilia A and B [4]. Extended half-life products are changed so the factor lasts longer in the body [4].
• Non-factor therapies. These help prevent bleeding or help clotting in other ways, without replacing the factor itself [4][5]. For hemophilia A, one approved product stands in for the function of the missing factor VIII [3].
• Gene therapy. Gene therapy gives the body working copies of the gene [4]. It is FDA-approved for some adults with hemophilia A or B who meet certain criteria [3]. NBDF advises working with your HTC to learn more about gene therapy [4].

Preventive treatment, called prophylaxis, is used to stop bleeds before they happen [3].

What is right for one person may not be right for another. A second opinion is a chance to talk through the options that may apply to you, and what the trade-offs are. It is not a reason to stop or change your treatment on your own. Any change should be planned with your treating doctor and HTC.

What does a second-opinion review look at?

At Hemo-Health, a second-opinion review covers:

1. A full review of your medical history, including your diagnosis, your bleeds and any complications.
2. An analysis of your current treatment plan: how it is working for you, and where it may not be.
3. Alternative therapy recommendations to discuss with your care team, if any make sense for you.
4. Ongoing care coordination with your hematologist, HTC and other doctors.

Learn more on our Hemophilia Care page.

What should I bring?

The more we can see, the more useful the review. You don't need all of this, but bring what you can:

• Your diagnosis: the type of bleeding disorder and your factor level, if you know it
• Inhibitor history: any inhibitor tests and results
• Your treatment or bleed log for the last 6 to 12 months, if you keep one
• A list of all your medicines, including vitamins and supplements [7]
• Recent lab results
• Recent imaging, such as joint X-rays, ultrasound or MRI reports
• Notes from recent visits with your HTC or hematologist
• Your questions, written down, starting with the one that matters most to you

When you contact us, we'll explain how to share your records.

Can a second opinion be done by telehealth?

Yes. Many people with hemophilia live far from an HTC and travel long distances for specialized care [8]. Telehealth lets patients connect with specialists in other places and get second opinions when needed [8].

A video visit works well for talking through your history, going over your logs and showing any joints or bruises on camera [9]. It has limits. A doctor can't do a hands-on physical exam by video, and lab tests and physical therapy checks still need in-person visits at least once a year [9]. Telehealth is meant to add to in-person care, not replace it [8], so your local team stays an important part of your care.

Read more about how telehealth works for hemophilia care. Availability depends on your state and on licensure. See the states we serve.

Does insurance cover a second opinion?

Coverage depends on your plan. Ask your insurer, and ask us when you contact us.

Before your visit, it helps to call the member services number on your insurance card and ask whether a second-opinion visit by telehealth is covered, and whether you need a referral first.

If your insurer delays, denies or limits a treatment your care team recommends, you don't have to face it alone. Dr. Moleski advocates for patients with bleeding disorders when insurers delay, deny or restrict access to care.

Frequently asked questions

Do I need a referral for a hemophilia second opinion?

Some insurance plans ask for one, so check with your plan, and ask us when you contact us.

Will a second opinion change my treatment?

Not on its own. You'll get recommendations to discuss with your treating doctor and HTC. Any change should be made together with them.

Can I keep seeing my HTC?

Yes. A second opinion adds to your care and does not replace your HTC.

Can my child get a second opinion?

Parents may want a second look at a child's plan, especially soon after diagnosis. Contact us to ask about a review for your child, and keep your child's HTC involved.

Is Hemo-Health an emergency service?

No. For a serious bleed, see the emergency note below.

Become a patient

If you'd like a second opinion on your hemophilia care, start with our intake form, or call us at 636-628-6604. We'll walk you through the next steps.

In an emergency: A bleed in the head, throat or abdomen, or any serious injury, is an emergency: call 911 and tell them you have hemophilia. Then contact your hemophilia treatment center (HTC).

Sources

1. Centers for Disease Control and Prevention (CDC). About Hemophilia. https://www.cdc.gov/hemophilia/about/index.html. Accessed 2026-10-21.
2. Centers for Disease Control and Prevention (CDC). Data and Statistics on Hemophilia (page dated 2024-05-15). https://www.cdc.gov/hemophilia/data-research/index.html. Accessed 2026-10-21.
3. Centers for Disease Control and Prevention (CDC). Treatment of Hemophilia. https://www.cdc.gov/hemophilia/treatment/index.html. Accessed 2026-10-21.
4. National Bleeding Disorders Foundation (NBDF). Current Treatments. https://co.bleeding.org/bleeding-disorders/treatment/current-treatments.html. Accessed 2026-10-21.
5. National Bleeding Disorders Foundation (NBDF). Hemophilia Treatment 101: Understanding Today's Options (2025-08-22). https://www.bleeding.org/news/hemophilia-treatment-101. Accessed 2026-10-21.
6. Centers for Disease Control and Prevention (CDC), archived. Bleeding Disorders in Women and Girls: State of the Science and CDC Collaborative Programs (summary of Byams VR et al., J Womens Health 2022). https://archive.cdc.gov/www_cdc_gov/ncbddd/blooddisorders/women/features/state-of-science-and-cdc-programs.html. Accessed 2026-10-21.
7. MedlinePlus, National Library of Medicine. Your cancer diagnosis: Do you need a second opinion? https://medlineplus.gov/ency/patientinstructions/000930.htm. Accessed 2026-10-21.
8. Great Lakes Hemophilia Foundation. Telehealth for the Bleeding Disorders Community (2023-01-18; republished from HemAware). https://glhf.org/telehealth-for-the-bleeding-disorders-community/. Accessed 2026-10-21.
9. HemAware, National Bleeding Disorders Foundation. What Parents Should Know About Telehealth Appointments (2021-01-25). https://hemaware.org/life/what-parents-should-know-about-telehealth-appointments. Accessed 2026-10-21.