When scars from my IV infusions lead to false assumptions
What I wish people better understood about hemophilia treatment
Years ago, I attended a bleeding disorders conference where a person with hemophilia shared about an encounter they had with a law enforcement officer during a routine traffic stop. In order to appreciate the exchange, it’s important to understand that those of us with hemophilia are missing a protein necessary to help blood clot. Thankfully, there are medications available to replace this protein, which are administered intravenously or into a vein. Patients often learn to infuse themselves, providing independence and greater normalcy.
With that, here’s an account of the traffic stop:
Officer: “Can I see your identification and insurance?”
Person with hemophilia: “Of course. Here it is.”
Officer (noticing scarring near their veins): “Are you an IV drug user?”
Person with hemophilia: (Pauses) “Yes, officer. Technically, I am.”
Officer: “Do you have IV drugs in your automobile right now?”
Person with hemophilia: (Pauses again) “Yes, officer, I do.”
If you understand hemophilia, you might read this and chuckle. Many of us are on treatment regimens that involve infusing medication into our veins multiple times a week. (I infuse every 48 hours if I’m not bleeding and every 12-24 hours if I’m managing an active bleed.)
In this scenario, the officer may have suspected illegal drug use, and the driver’s answers likely only reinforced that suspicion.
The person did eventually explain to the officer that the “IV drug” they had in the car was factor VIII (FVIII), a medication prescribed to help their blood clot and prevent spontaneous bleeds, which can be life-threatening.
Emergency room impressions
I’ve been in a similar situation. I once needed emergency care, as I was concerned about a potential stomach bleed. However, when faced with the possibility of a serious bleed, the first thing I do is infuse FVIII. Infusing first helps prevent a potential bleed from spreading in the time it takes to undergo testing and imaging. I learned this from my hemophilia treatment center.
I then sought medical help, and asked for my hemoglobin to be checked. When the tech drew my blood, she noticed I’d already been poked in a nearby vein. “Oh no, we already got you once today,” she said.
Not thinking about how it could be interpreted, I replied, “Actually, I infused myself today. I had some issues and had to poke three different veins. Hopefully there are still some decent ones for you to use.” The tech’s eyes widened and she exchanged a look with another tech in the room.
While I did tell them I have hemophilia and need to infuse my medication, I learned my lesson. When I saw all of my lab results, they included a full screening panel for illegal drug use. (Yes, every single one was negative. I’m 52 and have never even been drunk. It just isn’t my thing.)
Managing first impressions with hemophilia
These stories make me think about the myriad challenges we face as people with hemophilia. Coping with the realities of a bleeding disorder is a lot, even without the added stress of people looking at scarring near our veins. They sometimes jump to (wrong) conclusions about who we are as people and the activities we engage in. When medical providers suspect that we are using illegal IV drugs, it can change the way they interact with us, potentially having a detrimental impact on our care.
I realize I have to take extra time to explain hemophilia and its treatment to ensure people understand. Sometimes I even dress up in business casual clothing before seeking emergency care for a bleed so that I make a good first impression. I want to be listened to and taken seriously.
Ridiculously, I must think about the impression I might make when accessing healthcare services. I know it’s better to be prepared and proactive.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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