I was happy to have the opportunity recently to share my personal experiences at the Synergistix Conference. My remarks were intended to show how vitally important Patient Support Programs can be to any family facing an overwhelming healthcare challenge.
Let me begin by asking you, what is your picture of mental health?
When I ask you that, what’s the first thing you think of? Have you ever actually given it any thought?
Maybe these are some of the things that immediately come to mind:
- Stress from work, family, sickness, dealing with a chronically ill family member
Or what about this — that seems to stand for everything above and something worse: stigma. What about the stigma of mental disease?
An athlete and young professional
As a young professional, I personally never gave it much thought. Why should I? It just didn’t have a place in my life. I was a competitive athlete, eventually a D1 student athlete intent on making it to the NCAA tourney. You might say I was a driven young woman, focusing on my physical health while trying to manage my focus and ability to handle stress in intense competitive situations.
Later, as I grew into a member of the workforce, I always leaned on exercise to manage my stress at work. It was a way to make my body and mind feel good.
I connect my first experience with mental health with the World Trade Center attacks on 9/11. The grief was nothing I had ever experienced up to that point in my life. Many funerals later, I realized I needed help. Was it PTSD? Did I even acknowledge to anyone else how I was feeling or what I was going through? No, I didn’t tell anyone. But I did seek out a counselor.
Marriage and our first child
Now fast forward a few years. I met and married a wonderful man, and three years later we had our first child. The joy was overwhelming — after I got over the pain of bringing that 10-pound, 3-ounce baby into the world. You really couldn’t call her “my little one,” since she came to life about the size of a 3-month-old.
As a first-time parent, do you have any clue what you’re doing? No, not really. But we sure learned a lot with that first child, didn’t we? Caring for and loving this person right from the start — yes, it’s so true that it’s your “heart walking around outside of your body.”
We had the typical learnings of new parents those first years, especially with the added difficulty of our daughter hitting the Terrible Twos early. Weren’t we the lucky ones to start experiencing defiance and tantrums at 18 months old? You know the tantrums I’m talking about: Not the simple ones of crying from over-exhaustion or not getting something they want from the store. I mean the throw-yourself-on-the-floor-in-the-middle-of-the-mall, screaming, kicking, flailing all around tantrums.
Before you’re a parent you have a tendency to think you know it all. I remember myself as that young professional, traveling quite a bit, thinking while on a plane with that child, the one that just won’t stop crying and yelling: What kind of parent can’t take care of their child?
We’ll the harsh reality of that mall tantrum knocked me to my knees. And that was just the beginning of it.
The tantrums came all of the time, without warning. Was it the way we were parenting her? Was it — as our families were saying — that I’d gone back to work too soon, traveled too much, or was too focused on my career? Everyone had an opinion. They said my husband and I weren’t “aligned,” that we were yuppy parents, that we didn’t know how to be consistent and discipline her. “Give her to us for a week,” they said, “We’ll straighten her out.”
As if it were that easy. We knew we had a lot to learn, but how could we be this bad as parents? Were we really causing our child to be like this?
I needed to figure out what this was, what was going on, and what to do about it. While studying for my Master of Public Health degree, I had learned about primary, secondary and tertiary prevention. I knew about interventions and preventing or reducing the impacts of disease or injury.
So why was I not asking others? Why wasn’t I getting help?
Do you remember that word “stigma”? Yes, it was there from the time the tantrums began. The stigma of being bad parents. So I withdrew from people who would judge me, and I set off on what would become the biggest challenge of my life and, ultimately, my personal calling.
So let me ask again, what is the face of mental health? Here’s what it is to me: It’s the story of our family’s journey.
Step One was confronting the stigma I felt and had been reacting to. Real or perceived, we couldn’t let that be an obstacle. Beyond that, we had to use the U.S. healthcare system and get the treatment and support we needed.
We found that system to critically fragmented, as all of us who work in the healthcare industry understand. Throughout our journey, I saw the complexities of the system and opportunities to make it better, primarily by putting the patient at the center. But we were dealing with system we have, not the one we hope it can be.
Let me walk you through what it looks like from my point view, through my lens as a female leader, an Ivy League undergraduate, with two master’s degrees and 23+ years’ experience working in healthcare.
By the time she was in kindergarten, my daughter was lost and unsustainable in a school setting. She was biting her fingers and nails, and over-turning tables. She was unable to sleep, disturbed by every little sound in her room. Making it worse, she had extreme fight or flight responses to situations.
At this point, we had already been to two different therapists. We proactively asked her teachers if our daughter’s behavior was typical. We were consistently told she was extremely bright, just socially delayed. Despite this, as I said, she had become unsustainable in kindergarten.
It was time to consult to a psychiatrist. After half an hour with my 5-year-old, I was told: “You have a very lovely, bright daughter; she is, however, extremely defiant. It’s either a mood or anxiety disorder. Are you opposed to pharmaceutical interventions? They will help us rule things out.”
All I knew is that we couldn’t live like this anymore. I was 3 months pregnant with our third daughter and we had to do something,
Have you heard of Risperdal? Up until that point in my life, I hadn’t. I had worked in
oncology at Johnson & Johnson (J&J) for 9 years, knew many key opinion leaders (KOLs), knew the questions to ask, could be a patient advocate for anyone who asked. But ask me about mental health — I didn’t know the first thing about it.
As it turned out, Risperdal is made by J&J. Reading the Pl, the least of my concerns with adverse events (AEs) was weight gain. But what is tardive dyskinesia? My 5-year-old can have early maturation?
I was up until 3 a.m. reading about this medication on reputable sites — which inevitably led me to blogs. I knew better. (I’d advise anyone I know not to read unvalidated items on the internet.) Yes, I was freaking out. Leaning over my daughter at 4 a.m. thinking “How quickly will I know if she has facial tics?”
Move to an academic psychiatrist
The next stop on our journey was an academic psychiatrist. He didn’t believe in her diagnosis or the Risperdal and referred to it as a chemical straight-jacket. Instead, he diagnosed her with ADHD (impulsivity arm) and anxiety and switched her to a stimulant — to which she had a severe adverse event, hallucinating that she was being attacked by bees in school.
On the advice of a classmate from my undergraduate days, we took our daughter to Connecticut. She was rediagnosed, this time with Generalized Anxiety Disorder (GAD), Oppositional Defiance Disorder (ODD), and Sensory Disorder. We proactively admitted her to an Intensive Outpatient Program (IOP) at the age of 6.
It went on and on. Movement from Catholic school to public school. A year later, again not sustainable in school. An individualized education program (IEP). Paradoxical reactions to almost every medication. Qualifying to out-of-district placement for school that supports children with mood and anxiety disorders.
What had it all amounted to? Four therapists, 3 psychiatrists and 13 meds. Out-of-district placement. Suicidal ideation at the age of 8. Institutionalized for 70 days in 2016 and not one opportunity to use a patient support program. No one offered it to us.
Which is the point of my story.
Patient Support Programs
Patient Support Programs — have you ever had the opportunity to use one? It’s amazing that through our journey, no one pointed us in that direction. None of the therapists, nor the psychiatrists. Adding to the problem, most psychiatry meds are so old that the branded drugs are no longer used, therefore no patient support programs. Plus, many aren’t indicated in children.
Finally, in 2016, a colleague who was a former practicing adult psychiatrist introduced me to a national program called “Moms 2 Mom.” Based in Piscataway, NJ, it’s a caregiver support group. And it helped me get through the worst year of my life.
Patient support programs are many things. They’re clinical educators who can help guide patients, caregivers and HCPs on disease-state education, specific information around medications, and education on resources.
Patient support programs help people know more about the benefits and risks of medications and how to take them appropriately.
Patient support programs give people guidance and support regarding access to the medication and the importance of taking it. A patient support program may include journaling when the meds are taken, documenting effects of the medication, and having a person or app to track it with.
In our experience, by providing that guidance and support, patient support programs:
- Build confidence in the prescribed medication
- Help patients know what they should be looking for in terms of treatment results, side effects and adverse events
- Offer direction around how and where to get it
- Point you to various types of resources
- Contribute to better adherence, and better outcomes
All of that was immensely helpful to us. But, in my case, the greatest benefit may have been that it made a very scared person feel less alone.
Ashfield Patient Solutions
Today, I’m pleased to be working within the Patient Solutions team at Ashfield because of their strong track record in delivering quality patient support and their role in helping the pharmaceutical industry better understand the value such programs offer the patient.
After my family’s experience, I think it’s especially important that Ashfield provides personalized interactions between patients, caregivers and Clinical Educator teams for better disease outcomes. That’s why, as I mentioned, it’s become my calling to make sure other patients, families and healthcare professionals have timely access to the information and support they need, when they need it. Our journey ended with our daughter getting the support she needs and me getting a profession I believe in.