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Affording to Bleed

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

I think we can all agree that factor is an expensive drug.

The Explanation of Benefits (EOB’s) that arrive in the mail each month are horrifying to look at. The ones we get are on the far end of the “oh-my-goodness-that’s-a-lot-of-money” spectrum. And those are just the ones that include Thomas’s factor supply for scheduled infusions. The really frightening ones include extra factor for bleeds, lab work, inpatient hospital stays, emergency room visits, and doctor’s fees (in addition to the regularly scheduled factor).

In the bleeding community, we do a pretty good job explaining to lawmakers and others how expensive the life-saving drugs are that our babies need. We expertly detail why it’s so vital for bleeding patients to have access to their medications.  We talk about how increased co-pays, exorbitant deductibles, co-insurance and out-of-pocket expenses will impact our ability to maintain insurance coverage.  Those are very important pieces that we should talk about, but what we forget to discuss are the day-to-day financial ramifications that come with living with a chronic condition.

We live in Colorado and it obviously snows a lot. We would like to follow our homeowner’s association rules about snow removal, but seeing as how our driveway is literally falling apart, we can’t shovel it. If we did, not only would we shovel up the snow, but chunks of concrete.  It’s not that we wouldn’t like to spend the money to repave it — it’s just that we think paying for our insurance to keep our son healthy is more important than a concrete slab.


Valued and well-meaning volunteers always bring Thomas gifts of blankets, stuffed animals, games and more every time he’s in the hospital.  We truly appreciate them. But the mommy guilt settles in and I find myself standing in Target buying gifts for the girls to prevent them from being short-changed.For a stretch of time in 2006-2007, we had to visit our HTC weekly, if not more often. I shudder to think of how much money I paid for parking, gas, and happy meals for the kids as they were always famished by the time we were finished.

Our credit rating is in complete shambles thanks to medical debt. Early on, we tried valiantly to keep up with all the hospital bills, using every line of credit we had to pay off the debts. While we kept ourselves barely afloat, it really came back to bite us when it came time to buy out the lease on our mini-van. The finance guy at the car dealership took one look at our credit report and cringed. Thankfully, he showed us some compassion and worked a deal that wasn’t ideal, but allowed us to keep the car. I had been in an absolute panic – I didn’t know how we would manage without a car to get to medical appointments, yet the cost of medical appointments was the reason I couldn’t afford the car.

The cost of living with hemophilia is not just the cost of the factor or insurance – it’s the money out of pocket for all the other little (and big) things that are involved in taking care of your children during the course of office visits and hospital stays. Those barely edible meals in the cafeteria add up. Buying a wheelchair out of pocket adds up. The travel to and from appointments adds up. The medical debt – and not just the debt for the actual medicine – is staggering.

We are blessed to have patient assistance programs through our industry partners and local chapter. If needed, families should not feel ashamed to take advantage of these programs – that’s what they’re here for.  Even with those resources, we have peers among us who must turn to food banks to put dinner on the table. The bleeding community deeply cares for one another and I’ve seen a group of families raise over $500 to help another family who was in a tight spot.  It was truly amazing to see a group of people who have the same issues help one another.   It’s not that we are unwilling or unable to help…it’s just the sheer expense of living with this disorder that we don’t discuss. It’s embarrassing to admit our financial dire straits publicly.

I always want to teach Thomas that there is no shame in living with hemophilia. I want to teach him to share with others what living with a chronic condition is like. I think it’s a narrow view just to share the impacts of the bleeds and the cost of insurance; it’s time to have an honest conversation without the embarrassment. If we are going to educate and raise awareness about hemophilia and all that it entails, we must talk about the uncomfortable financial ramifications of living with a chronic condition.

If you need help, please consider contacting one or more of these organizations. Please visit each organization’s website for more information:

Organization Program Description Program Website & Information
Hemophilia Federation of AmericaHelping Hands Program HFA’s Helping Hands program is designed to establish a rapid, non-invasive source of relief for emergency situations or urgent needs to persons who are affected by hemophilia or von Willebrand disease. Each year, Helping Hands aids hundreds of families with emergency/urgent funding to assist in crisis situations such as housing, transportation, and utility bills. http://www.hemophiliafed.org/programs/helping-hands/
Patient Services Inc Since 1989, Patient Services has helped people who live with certain chronic illnesses or conditions locate suitable health insurance coverage and access ways to satisfy expensive co-payments. By developing innovative financial assistance programs, we have helped tens of thousands of patients achieve positive health outcomes. Below is a list of our current financial assistance programs: https://www.patientservicesinc.org/how-we-help/financial-assistance-programs.aspx
Lone Star Chapter of the National Hemophilia Foundation Legal Hotline The Hemophilia Legal Hotline is available for gaining information on the legal rights of people living with a chronic condition. An attorney answers questions regarding legal rights of people concerning health insurance, work-related issues, and schools. http://www.lonestarhemophilia.org/legal_hotline.html

For a comprehensive, state by state listing of assistance programs, visit: http://www.needymeds.org/copay_diseases.taf?_function=summary&disease_id=14&disease_eng=Hemophilia&dx=11

Also check with your local hemophilia organization, Hemophilia Treatment Center and factor manufacturer for what assistance programs they may have available.

Sonji Wilkes was born and raised in North Carolina, where during high school, she developed an appreciation for volunteerism and community service. She graduated Magna Cum Laude with a BA in Behavioral Science from the Metropolitan State College of Denver in 2001. Sonji volunteers extensively in the bleeding disorders community and was selected as the 2006 National Hemophilia Foundation’s Volunteer of the Year. Sonji, her husband Nathan, and three children: Nora (11), Thomas (9), and Natalie (7), currently reside in Colorado.

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*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

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