Though 1.6% of the U.S. population have borderline personality disorder (some studies suggest actually up to 5.9% have the diagnosis), as of right now, there are NO FDA approved medications for the treatment of BPD. I ask this year that Big Pharma make a resolution to address the treatment of and stigma surrounding BPD.
In the past few years, I have had the privilege to talk with some of the decisions makers of large pharmaceutical companies through conferences and patient advocacy. If you’ve read my blog from the beginning, you’ll know I’m not Big Pharma’s biggest fan – having grown up with them paying for extravagant dinners and vacations to “educate” doctors while others could/can barely afford the costs of their medicines – what I call the Costs to Live. (See The Costs to Live Parts 1, 2, 3, and 4).
The decision to collaborate with Big Pharma on different endeavors has not been an easy choice for me and I’ve not made it easy for them. I’ve made sure that they know how I feel about them. I’ve shared my posts including an open letter to one and I’ve tweeted at them. And any chance I’ve met someone working for a pharmaceutical company I’ve used the chance to advocate vigorously for patients.
Recently, I reached out to some of these contact to tell them of my current situation. They responded politely, letting me know that they could not help me individually but hoped I would get the support I need. I appreciate they responded at all but I had more to say which I will relay here (with the company name redacted and a few edits) because I believe the message applies to all of Big Pharma – that they need to turn their attention to BPD.
Dear Pharmaceutical Company,
Of course, I understand not being able to help me personally. It’s awkward to send any kind of request but I sent the [original] email including links to recent blog posts opening up about my diagnoses and difficulties and others’ efforts to help me because when we met you asked what I thought patient-centeredness means. At that time, I responded that every person, especially patients, wants to be seen and heard. And this is my way of continuing to ask to see and hear people like me – patients (whether advocates or not) who have fallen. So many patients have fallen and broken whether because of physical or mental health illness. Usually when it’s because of mental health illness, no one even speaks, thus their stories are hard to hear but they can always be seen if you look hard enough.
“A standard dictionary definition of compassion would read something like, ‘a sensitivity to suffering in self and others with a commitment to try to alleviate it’. This encapsulates two basic processes. The first is the courage to turn towards, engage and be in touch with pain and distress, rather than opting to avoid or ignore it. The second is the preparedness to acquire the wisdom we need to behave appropriately in the face of suffering.
The courage to be compassionate lies in the willingness to see into the nature and causes of suffering – be that in ourselves, with others or humanity more generally. …”
At the same time, I’ve often said that the ability to hear someone is not necessarily contingent upon the level at which he or she speaks, but also depends upon the effort the listener is willing to expend. For sometimes a person’s loudest statements are inaudible or unspoken and can only be found in the subtleties and nuances of that person’s actions or inaction.
In writing the email to tell you of my current struggles, including my diagnosis of borderline personality disorder, and sending it forth to you, I simply ask that you see and hear me, an opportunity to practice the patient-centeredness that you have been trying to understand. I ask that you bear witness to my story by listening to the words I write, by turning towards, engaging and being in touch with pain and distress, and being prepared to take this into account in all you do – especially when you have such a powerful position. I want to open to you the ability to see suffering that is usually hidden. My words may not completely represent others’ stories or struggles with mental health and yet much of the feedback I’ve received privately has been to the effect that others are struggling and unable to talk. I am simply putting out there what I know, letting myself be as vulnerable as possible for I have nothing left to lose.
I know that pharmaceutical companies say they are committed to mental health (or so the headlines say from press releases, connections with mental health organizations, and manufacturing of psychiatric drugs [for disorders other than BPD] seem to imply). I don’t know that there’s any current incentive or want to go down the road of treating borderline personality disorder, but I do know that there are absolutely NO drugs approved by the FDA for BPD though it is more common than most psychiatric disorders. It is one of the most stigmatized diseases particularly because the symptoms are so hard to treat. And while there have been great strides in therapeutic treatment (through cognitive behavioural therapy, dialectic behavioural therapy, and schema therapy to name a few), those of us suffering could really use help to deal with the neurobiological underpinnings that create and maintain this pernicious disease.
I know that the NIH has delegated relatively little funding for BPD research (as of 2014, the sum across all 25 years of funding for BPD was $55 million vs. $622 million for bipolar disorder), but that needs to change. And that will likely only change when a pharmaceutical company like yours listens to advocates and starts to lead studies for BPD and pursue medications to help. For now, we have to hobble together really inadequate medications which barely maintain our stability. And this ends up leading to poly-pharmacy, the risks of which can run quite high – including death.
If you really truly want to be patient-centered, and I do believe you want to, I urge you to hear my story and to hear my request regarding research and development of treatments for BPD. You cannot give me money directly. But what if you could have stopped me from needing so much in the first place? What if you can help others like me – and there are too many like me – from losing everything as a result of their mental health illness? THAT would be patient-centered. THAT would be an incredible investment (for those who are worrying about the bottom line).
I ask that you make a resolution in this new year to address Borderline Personality Disorder.
Please hear me.