Brindley Brooks, who founded HS Connect (HSconnect.org), a patient advocacy group for those affected with hidradenitis suppurativa (HS), discussed step edits and other barriers to treatment caused by insurance requirements in the management of HS.
More consideration is needed from insurance companies in prioritizing the clinical judgement of physicians caring for patients with hidradenitis suppurativa (HS) to avoid unnecessary treatments and reduce the time to effective management, said Brindley Brooks, who founded HS Connect (HSconnect.org), a patient advocacy group for those affected with the disease.
What do you want insurance companies to know about HS?
There are a lot of hurdles for people with HS to get appropriate treatment. There’s currently only one FDA-approved treatment for HS. All of the precursors that we are required by most insurances to try, including metformin in some cases, spironolactone—those are all good options for HS. However, none of them are FDA approved for the treatment of HS. So, it's difficult because there are a lot of hoops to jump through as an HS patient in order to sometimes get to the next step where you need to go.
So, when people enter treatment, they may be past the point where some of those prior medications will work, and need to kind of go straight to something like a Humira [adalimumab] based on what stage they're at and the progression of their disease. But unfortunately, without doing all of those prior medications, a lot of times insurance companies won't approve those medications like Humira until later and when they've gone through the whole gamut. That's a really frustrating situation for a patient with HS.
Each of those medications, we’re told to give sometimes up to 6 months to work. Six months is a really long time when you're dealing with this chronic condition. So, it feels like it's an endless cycle of jumping through hoops to get to where you need to be, and where your physician thinks you need to be. So, I think that one of the difficult things about dealing with insurance for us is the amount of time that it takes to jump through all those hoops when the medical provider who is an expert potentially in this area is saying: this is futile to try these but we have to for insurance.
It is a really depressing thing to deal with, because you know that you're just prolonging your disease process and potential help for your disease. And dealing with it on a daily basis is very painful. For us, 3 to 6 months is a really long time—so, I wish there was more consideration given to the doctors and the physicians who are prescribing as far as their clinical judgment and that insurance would take that more into consideration.
It's not a one-size fits all disease. Sometimes it's a combination of multiple things in order to get a patient to resolution—not even resolution, because that's a rarity—but to be in a better situation with their HS, and to be under better control. So, I really do wish that insurance companies would take more into consideration the providers opinion and their expertise on the disease.