Sticking With The Plan

It’s hard enough getting your act together in the morning to make it to school or to work on time. You can only hit the snooze button so many times before having to stumble out of bed, shower, shave, dress, grab a bite to eat, and dash out the door. Trying to fit in your prophylaxis treatment is just one more step that may have you shrugging your shoulders and saying, “What’s the big deal if I skip a day or so?”

Understandably, your parents and doctors are probably giving you a hard time about that (if you’re even telling them, that is). Before we jump on your case too, you might want to know that not following the plan is not all that unusual (which does not mean it’s advisable!). In fact, every day about 50 million Americans forget, or deliberately decide not to take their prescribed medication, whether it’s for asthma, diabetes, high blood pressure, hemophilia, or any number of other conditions.

For individuals with severe hemophilia, not sticking with the plan can result in serious consequences as well. “Patients who do not adhere to prophylaxis are more likely to experience unnecessary pain and long-term damage to joints,” says clinical social worker Kimberly Winship, LCSW-C, of the Johns Hopkins Hemophilia Treatment Center. “This may result in pain while doing physical activities that they enjoy, and they may even have to eventually give up activities they once enjoyed due to joint damage, loss of range of motion, and pain.”

So, if everyone knows they should be taking their medicine, why aren’t they?

For many, lapses in insurance coverage play a large part, according to Winship. “Some young men have few insurance options,” she says, “and even those who have insurance (or who are covered under their family’s policy) may forego prophylaxis from time to time to ensure that they have enough if they have a serious bleed.” (If you find yourself in this situation, Winship advises you to get in touch with your hemophilia treatment center (HTC) staff, who may be able to help you obtain insurance or emergency factor, provide supportive services, and home nursing).  

There are a host of other reasons why young men may skip their prophylaxis, adds Mary Jane Berry, MSW, a clinical social worker at Georgetown University’s Hemophilia Treatment Center. For starters, she says, young people often think they’re “invincible.”

You also may not be adhering to the plan because you’re becoming independent and want to make decisions on your own. “Separating from your family and finding independence is part of the growing process for adolescents and young adults,” says Sue du Treil, PhD, LCSW, senior counselor at the Louisiana Center for Bleeding and Clotting Disorders, and also an adjunct assistant professor at Tulane University.

“At these times in our lives we are learning to separate from our caretakers and learning to be independent, so some experimentation is needed,” says du Treil.

That’s especially true for people with a chronic illness such as hemophilia, who may have spent their entire life being told what to do. “It’s not unusual for people to start experimenting with their treatment regimen as they get a bit older,” says du Treil.

It’s a complex situation, according to du Treil, not only for the patient, but for his parents and healthcare providers as well. “You want these young men to be independent but you also want what’s best for them.”

Self-esteem also plays a role in determining whether young men follow the prophylaxis regimen, du Treil believes. “If you feel good about yourself, you want to take good care of yourself,” she says.

When encouraging young men to adhere to their treatment plan, du Treil often makes her point with patients and their families by pointing to the narrow Huey P. Long Bridge that spans the nearby Mississippi River. “Could you cross the bridge in your car, if there were no railings?” she asks. “Yes, you probably could, but it’s risky.”

The same goes for ignoring your prophylaxis treatment, says du Treil.

“If you don’t take your medicine, it is like trying to cross the bridge without railings. Your body may react,” she says. “You may have more bleeds and more pain, because your protection is missing. Eventually you’ll realize that if you take your factor, then you are protecting your body. This will help you to adhere to taking your medication.”

You’re more likely to stick to your plan if:

• You have a good relationship with your healthcare team, including doctors, nurses, social workers, pharmacists, etc. Open communication is important. Share your concerns and get the answers to any questions you may have.
• You get all your medications from one pharmacy. This way, the pharmacist can keep track of what you’re taking and monitor your situation for any complications.
• Support groups may be helpful by introducing you to other people in your situation and reinforcing the importance of adhering to your plan. (For younger children, du Treil strongly recommends summer camps, so kids can be with others who are also coping with their hemophilia.)
• You place reminders where you can see them in the morning (on your bathroom mirror, your computer, your iPhone…whatever you see first).
• You log your infusions. Logging can be as basic as tearing off the factor box top and writing the date and time on it, duTreil says. You can also try spreadsheets, either homemade or provided by your HTC, or you can check many of the Web-based programs available.

While skipping your prophylaxis may be your way of proving you are independent, of trying to ignore the fact that you have hemophilia, or simply of not wanting to squeeze one more thing into your already busy day, at some point, says du Treil, you will realize that—difficult as it may be to live with a chronic illness—all things considered, you are living in a time when there is much help for you to cope with your illness.

“With the medications available today, men with hemophilia have the potential of living a full life,” says du Treil. (OK, you can’t try out for the NFL, but in reality, how many guys actually can?)

“In the past,” du Treil continues, “having hemophilia was considered a disability, but it’s not anymore. It’s a chronic illness—like asthma, diabetes, even many cancers—that can be treated and managed so you can lead a long, full life.”