July 2017 marked the first FDA approval of a sickle cell drug in 20 years. The product is called Endari, which is made by Emmaus Medical. Unfortunately, though, sickle cell patients were, for the most part, oblivious to the existence of this new drug. People with this rare, painful and life-threatening disease are anxiously awaiting new sickle cell drugs, right? The sickle cell drug marketing departments that assumed this were wrong.

Endari is expected in pharmacies soon but there is so little buzz about it in the sickle cell community. Why? Emmaus Medical, like all the other companies about to do sickle cell drug marketing, skipped a step. The missing step is connecting with and gaining the trust of sickle cell patients.

Sickle cell patients are weary of new medicines because all they’ve had for 20 years is hydroxyurea. That’s a chemotherapy drug that only works for 1/3 of sickle cell patients and brings with it typical chemotherapy side effects! Therefore, it’s no surprise that most patients don’t want to try a new drug. In their minds, new drugs mean new problems by way of side effects, and they already have enough health problems. More importantly, they do not trust pharmaceutical companies. These companies have never done anything good for them. Instead they appear to be out to get rich off their pain and suffering.

How can a sickle cell orphan drug pharmaceutical company ever break into this mistrustful community?

First, get your sickle cell drug marketing department earnestly involved in the sickle cell community as early on as possible. Also, get several key sickle cell patients and hematologists on your side.

Getting involved does not mean sending the local sickle cell chapters and foundations around the country some brochures. It does not mean sending one of your scientists to speak at the support group meetings. It is not limited to speaking at medical conferences and writing articles only for clinicians. Giving talks and handing out brochures doesn’t win these mistrustful sicklers or their hematologists over. Compassion, giving and time wins them over.

Call them, go where they are, be helpful to them, talk about what they want to talk about, answer their questions – even ones that have nothing to do with your drug. Let them get to know you and you get to know them. That’s how trust is built.

The opportunity

I have sickle cell and used to be a sickle cell gene therapy researcher. Because of that, I am an invited speaker at sickle cell events locally and nationally, and have clients that are researching new sickle cell drugs. I have my finger on the pulse of the sickle cell world, and I haven’t seen any sickle cell pharma company do this properly yet.

There are many educated sickle cell patients, like myself, who are willing and able to help companies. Let us help you tap into this market the correct way: slowly and steadily building trust and getting word of mouth referrals. Give the sickle cell community a chance to hear what Imara, Emmaus Medical, Sancilio, NKT Therapeutics, Global Blood Therapeutics, GlycoMimetics, Novartis and other companies are doing for them.

Additionally, this strategy of gaining trust within the sickle cell community is important for sickle cell gene therapy companies too. So Bluebird Bio and others will need to gain trust as well.

Contact me if you want to discuss possible strategies. We can help you align your sickle cell drug marketing strategy with the personality of the sickle cell community.