“Ask a Social Worker” is a regular column featuring questions from the community and answers from members of NBDF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected].
Dear Jessica,
Now that I’m in my early 60s, I think a lot about what I can do to make sure I age well with hemophilia. What are the most important things I should do?
Thanks to new therapies and advances in hemophilia treatment, people in the bleeding disorders community are living longer than ever. While this is a major step forward, it also brings new challenges that come with aging.
In health care, the word “transition” often refers to moving from one stage of care to another, like from pediatric to adult services. But transitions happen throughout life, often tied to major events. Aging, however, is different — it happens gradually and often prompts more reactive than proactive planning.
Preparing for aging and future planning involves proactively considering your health, finances, living arrangements, and personal wishes to ensure peace of mind and quality of life in later years. Here’s what you need to consider:
Protect Your Joints
Joint health is an important aspect of hemophilia and older adults. As people with hemophilia begin to age, maintaining joint health becomes even more important. Whether it’s related to spontaneous bleeds or an injury, bleeding into joints can cause damage, limit range of motion, and increase the propensity for chronic pain. As we age, there is a natural “wear and tear” to the cartilage of our joints. This puts older adults with hemophilia at even greater risk to have joint issues, pain, and the possibility of more invasive interventions.
For these reasons, it’s important that as people with hemophilia age, they continue to attend a comprehensive clinic and have routine assessments of their range of motion and joint health. This also includes following through with any recommendations for outpatient physical therapy, imaging, and other referrals requested by a hematologist.
Recommended Reading: Aging Well with a Bleeding Disorder: What Women Should Know
Pain Management
Managing pain is another important piece of healthy aging. People with hemophilia are no strangers to pain, whether from bleeds or joint pain. It's important that pain becomes a staple of your conversations with your hematologists and that you understand the difference between chronic pain versus acute pain.
Managing and understanding pain symptoms and changes can be overwhelming, especially as there may be other diagnoses or problems that need to be dealt with. Having a journal or cataloging symptoms can help organize thoughts, prevent you from forgetting any important health information, and be an effective way to process and manage stress and anxiety related to pain and feeling overwhelmed.
Continue Reading: Aging with a Bleeding Disorder and Inhibitor
Important Legal Documents
For individuals with chronic health issues, having the proper legal documents in place is especially critical to ensure that their health care, financial, and personal decisions are respected and carried out according to their wishes.
Key legal documents include:
- A healthcare proxy (or medical power of attorney), which designates someone to make medical decisions on their behalf if they are unable to do so.
- A living will or advance directive, which outlines specific preferences for medical treatment and end-of-life care.
- A durable power of attorney, which gives a trusted individual the authority to manage financial matters.
- A last will and testament ensures that assets are distributed according to the person’s wishes and can help avoid legal complications for surviving family members.
Insurance Issues
As individuals age, their insurance needs and coverage options often change, making it important to regularly review and adjust plans accordingly. This includes understanding transitions such as becoming eligible for Medicare, considering supplemental insurance or long-term care coverage, and ensuring prescriptions and providers remain covered under new plans.
Those with chronic health conditions, like hemophilia and other bleeding disorders, should pay close attention to coverage for ongoing treatments, medications, and specialist care. Preparing for these changes in advance helps prevent gaps in coverage, reduces out-of-pocket costs, and ensures continued access to essential health care services.
For individuals who rely on high-cost medications, like factor replacement and bypassing agents, preparing for insurance changes with aging is especially important to avoid disruptions in treatment and unexpected financial burdens. As people transition to Medicare or adjust existing insurance plans, coverage for specific medications can change significantly.
Some plans may not cover certain specialty drugs, may require prior authorizations, or may shift medications to higher-cost tiers, dramatically increasing out-of-pocket expenses. This is particularly concerning for those with chronic or rare conditions who cannot safely pause or change their therapy. Understanding coverage options — including Medicare, supplemental plans, manufacturer assistance programs, and state or nonprofit resources — allows individuals to maintain consistent access to life-sustaining medications. Proactive insurance planning helps protect both health and financial stability as needs evolve with age.
Preparing for aging and its challenges is an essential step toward maintaining independence, dignity, and peace of mind throughout later life. While aging can bring uncertainties, proactive planning and remaining engaged in your health care can help reduce the stress that comes with this transition.
Aging is a journey, and while having hemophilia adds another layer of complexity, it does not make it impossible.
— Jessica Wulf, LMSW
Wulf is a social worker at Western New York BloodCare in Buffalo and a member of the Social Work Working Group.