A Promising Future for Patients with Bleeding Disorders

March 19, 2020

By NCECE Staff

A bleeding disorder researcher in a lab holding test tubes with blood inside themA century ago, the expected lifespan for an individual with hemophilia was about 11 years. Today, hemophilia A and hemophilia B, as well as other genetic and acquired bleeding disorders, can be successfully managed thanks to advances in treatment. But new challenges have also arisen: older adults are living longer and the aging population continues to grow. The population of adults 65+ with hemophilia is likewise expected to grow significantly in the coming decade,¹ highlighting the need for clinicians trained to address the needs of older adults with bleeding disorders. 

“The survival of our older adult patients has dramatically improved over recent decades and they are living long, healthy lives,” said Dr. Aric D. Parnes, M.D., Associate Director at Brigham and Women's Hospital’s Boston Hemophilia Center. Dr. Parnes attributes this encouraging outlook, in part, to providing patients with hemophilia with care equivalent to those who don’t have bleeding disorders.

He encourages clinicians to approach their care with a consideration for all aspects of a patient’s health – “besides just the bleeding” – including scheduling colonoscopies for older adult patients. “Providers can be reluctant to order colonoscopies for patients with bleeding disorders because of the fear of excess bleeding,” Dr. Parnes explained. “Patients tend to think this way too, so they avoid colonoscopy screenings, which could increase their risk of colon cancer.”

Not all bleeding disorders have the same risk factors, and some patients may experience symptoms differently based on their gender. “It depends on the bleeding disorder,” Dr. Parnes said. “Hemophilia A and B are X-linked genetic disorders, and women who have two X chromosomes often have less severe symptoms,² whereas von Willebrand disease affects men and women equally ³ and patients can experience less severe symptoms as they age.”

Patient education is important, especially for those with rare diseases. “Clinicians should encourage patients to become their own advocates, which involves reporting bleeding episodes to their doctor and equipping themselves with the proper supplies and medication at home,” Dr. Parnes said. “Patients should be reminded that there are over-the-counter medicines that worsen bleeding, such as aspirin and nonsteroidal anti-inflammatory drugs, so these should be limited.”

Research, education, and advocacy – tenets promoted during March’s Bleeding Disorders Awareness Month – can contribute to a very promising future for those with bleeding disorders. “We are in the midst of a therapeutic revolution in hemophilia, with new drug studies that have recently come out and have had an enormous impact on patients,” Dr. Parnes said. “Gene therapy is on the horizon within the next couple years, and clinical trials have been an unbelievable success.”

Additional education materials and resources for health center providers are available on the National Hemophilia Foundation website.

Reference 1. https://www.hemophilia.org/sites/default/files/document/files/Nurses-Guide-Chapter-17-Aging.pdf
Reference 2. https://www.cdc.gov/ncbddd/hemophilia/facts.html
Reference 3. https://www.hemophilia.org/Bleeding-Disorders/Types-of-Bleeding-Disorders/Von-Willebrand-Disease