Mission: To provide education and support for people with bleeding disorders and their family and friends.

inhibitor insights

sponsored by Novo Nordisk Inc.

Being Part of the Team
Cazandra Campos-MacDonald


 
Some of the most enjoyable times in my life were the months I spent playing softball in a summer league in Galena Park, Texas. The smell of my worn leather glove, the dirt from a great slide into home, and the team that played together with one goal in mind: to win the trophy at the end of the season. It took each of us to make our team function. Not just one person, but all of us together.

When living with an inhibitor, not only do you need a team to help determine the best treatment possible, but you also need to become a part of the team. Your firsthand knowledge of living with an inhibitor 24/7 is paramount in finding the right treatment, because you are the expert on your own story. When clinicians and families work as a team to determine the best approach to care, attention is given to the uniqueness of the inhibitor, and to understanding the patient and social environment. Then, the best comprehensive plan for treatment can be achieved.

The hemophilia treatment center (HTC) model provides a comprehensive approach to care that handles various aspects of a patient’s overall well-being. About 70% of people with hemophilia in the US receive multidisciplinary, comprehensive care in a network of federally funded HTCs.1 The HTC team consists of nurses, social workers, physical therapists, and other healthcare providers who specialize in treating people with bleeding disorders. This team not only manages the day-to-day care of an individual, but works to prevent and reduce complications.

Sometimes inhibitors challenge even the providers’ expertise and threaten the team approach. My youngest son, Caeleb, has had a tough journey living with an inhibitor. He endured bleeds that seemed never to heal, and the joint damage to his knee and ankle were significant. Treatment with bypassing products proved difficult, and he developed an allergic reaction to infused factor VIII, in addition to his persistent high-titer inhibitor.

Leading Bleeding Disorders Advocacy Organizations File Hemophilia Discrimination Complaint Against Wellmark Blue Cross and Blue Shield

 

Washington, D.C., August 15, 2017 – The National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) filed a complaint today with the Office for Civil Rights at the U.S. Department of Health and Human Services (HHS) requesting that federal action be taken to end an Iowa insurer’s discrimination against people with hemophilia. The complaint alleges Wellmark Inc. violated provisions of the Affordable Care Act (ACA) and effectively prevented hemophilia patients from accessing care when it carved certain counties in Iowa out of their ACA plans and then pulled out of the Iowa marketplace entirely. The complaint further alleges Wellmark violated the Health Insurance Portability and Accountability Act of 1996 (HIPAA) when it publicly stated it was providing health insurance coverage to a 17-year-old male with hemophilia at a cost of $1 million per month.

Hemophilia is a rare inheritable bleeding disorder that: prevents the blood from clotting normally; can result in extended bleeding after injury, surgery or trauma; and can be fatal if not treated effectively. The Centers for Disease Control and Prevention estimates 20,000 Americans have hemophilia.

“Prior to the Affordable Care Act, health insurance companies routinely denied coverage to people living with pre-existing conditions, and imposed annual and lifetime caps on benefits, which disproportionately affected people living with chronic lifetime diseases,” said Val D. Bias, CEO, NHF. “The ACA makes these discriminatory practices illegal, so it is unconscionable for an insurer like Wellmark to deny coverage to individuals with significant health needs, including people living with hemophilia. That is why we and our advocacy partners filed this complaint on behalf of the bleeding disorders community and, in essence, all individuals living with chronic health conditions.”  


How to Take a Holistic Approach to Managing Your Chronic Pain


One of the hardest conditions to treat is chronic pain because its root causes are most of the time obfuscated. Chronic pain can affect nearly every system of the body and can be exacerbated by mental issues. Many turn to opioids to help them manage their chronic pain, but that is problematic in most cases. Prescription drug abuse and addiction are more common in those who suffer from chronic pain. That’s why it’s vital to take a holistic approach to coping with your pain. Here are some tips.

Focus on sleep

For whatever reason, many people who suffer from chronic pain do not immediately make the connection between the way their body feels and their sleeping habits.

“Getting the proper amount of sleep helps the body fight inflammation, pain and disease. A 2009 study published in the medical journal Sleep found people who get less than six hours of sleep, or have disrupted sleep, have higher levels of C-reactive protein in the body, which causes inflammation,” says CNN. (For more on that study, check here).

Without sleep, your body and mind have no chance to reset and heal themselves. Being chronically exhausted only serves to exacerbate pain. 

Try an anti-inflammatory diet

Some of the prevailing thought on chronic pain is that it is caused in part, or at least exacerbated by, inflammation in the body.

“Nutrition that supports a diet rich in anti-inflammatory foods is another approach to chronic pain management. The anti-inflammatory diet is a lynchpin of such an integrative approach. Although there are no magic foods, putting the right combination of foods into your diet can produce remarkable results,” says the Cleveland Clinic.

So, how do you go about eating an anti-inflammatory diet? It’s all about adding certain foods and, possibly more importantly, eliminating quite a few. Vegetables in general, but especially broccoli, sprouts, cauliflower, and leafy greens, are great for reducing inflammation. Fatty fish rich in omega3 acids like salmon and mackerel, nuts, and berries are all known inflammation-reducers. Many nightshades like tomatoes are somewhere in the middle, helping some chronic pain sufferers and making the problem worse in others. It’s important that you pay attention to your body and figure out how what you eat, specifically, affects your level of pain.

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