Randy Curtis was diagnosed with severe hemophilia A at age 2. He didn’t expect to live a long life. Sixty years later, Curtis is the chair of the board of the Hemophilia Council of California, a nonprofit organization that provides education, services and advocacy to people with hemophilia in California. He leads focus groups of older men with bleeding disorders and works on research projects in the bleeding disorders community.
“In my 40s, I focused on getting life insurance so my wife and kids would be taken care of,” he says. Obtaining life insurance wasn’t easy or cheap, says Curtis. But he managed to secure a policy and obtain long-term care insurance for himself and his wife.
Long-term care planning doesn’t only relate to insurance, although comprehensive coverage should be a part of your plan. It includes everything from determining where you’ll live and how you’ll manage legal decisions to planning for your financial and medical resources.
With ongoing improvements in treatments for people with bleeding disorders, people are living longer. So consider these tips to help you prepare for your golden years:
Keep up healthy habits. As life spans lengthen for people with bleeding disorders, the focus shifts from bleeding issues and related complications to one that includes disease prevention.
“Patients with severe bleeding disorders are at risk for having certain health complications as they age,” says Rajiv K. Pruthi, MBBS, a medical doctor and associate professor of medicine and director of the Mayo Clinic Comprehensive Hemophilia Center in Rochester, Minnesota.
For example, patients over 65 often have arthropathy, permanent joint disease in multiple joints. This can decrease bone mineral density, which can contribute to increased risk for falls, fractures and other injuries. Talk with your doctor about ways to improve balance and manage your bone health.
Other health improvements, such as not smoking, exercising regularly and eating a healthy diet, can also help control your health risks as you age.
Talk with your providers. If you have questions or need support with planning, turn to the staff at your hemophilia treatment center (HTC). HTCs often have community resources to share.
Review your financial and insurance needs. When Eron Butler, 44, was diagnosed with type 2A von Willebrand disease at age 40, he met with a hematologist. The Las Vegas sales executive asked about possible health outcomes. He made sure he had adequate insurance coverage for possible traumas and elective care.
In general, you should know that Medicare—the federal health insurance plan for people 65 or older, among others—is not long-term care insurance, says Linda Brandeis, DCSW, LICSW, a clinical social worker in Seattle. She is past president of the Society for Social Work Leadership in Health Care. “There are now a lot of long-term care insurance plans that you can pay for over time.”
Don’t delay. When you have a bleeding disorder, you’re already used to preparing for activities in advance and making the best decisions for your health. Preparing for your long-term care is no different. As Brandeis notes: “It’s never too early to start planning.”