Precision medicine, big data, Alzheimer’s Disease, migraine, and RNA therapeutics.
Learnings from the April 2018 meeting.
Edited by Jill Condello, PhD, ICON Access, Commercialisation & Communications
Patrick J. Kennedy, the youngest son of former Sen. Edward M. “Ted” Kennedy, founded the Kennedy Forum in 2013 after serving eight terms in the House of Representatives from Rhode Island’s First Congressional District. Kennedy and his organization are advocates for improving mental health and addiction services and especially parity in insurance coverage. While in Congress, Kennedy was the lead sponsor of the 2008 Mental Health Parity and Addiction Equity Act. In his 2015 memoir, A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction, Kennedy described his own and his family’s problems with mental illness and substance abuse.
Most readers will be aware of parity issues, but it might be helpful to do a brief review. Your involvement with parity began soon after you were elected to Congress, correct?
I believe one of the big issues was how comprehensive it was going to be. Your father and Pete Domenici had a narrower conception about limiting parity to “serious” mental illness, and you pushed hard for something more comprehensive, correct?
And that bill passed in 2008?
But it took five years to come out with the rules to implement it? That’s remarkable. Why did it take so long?
First, the Mental Health Parity and Addiction Equity Act is a medical civil rights bill for people with brain illnesses. It essentially says inpatient in-network, outpatient in-network, inpatient out-of-network, outpatient out-of-network, pharmacy, and ER benefits—they have to be comparable both at the primary care level, secondary care level, and tertiary care level. So, you look at those six buckets. If you pay for cancer treatment, or diabetes, or cardiovascular disease in those six buckets, then you must pay for comparable care, access to that care, for people with mental illness and addiction.
So, we’re looking to effectively implement the parity law because, like the Civil Rights Act, it was one thing to have it on paper, but it really wasn’t adhered to unless there were court cases creating new common law standards.
So, I’ve really been after trying to establish those common law standards. I created ParityTrack.org to set up a 50-state scorecard, so everyone in their own state can evaluate how their state is doing, on a legislative level, on a regulatory level, and on a case-law level.
And I established ParityRegistry.org, which is a way for consumers who feel they’ve been wrongfully denied access to care to appeal their decisions through a guide that I’ve established.
And with ParityRegistry.org, I allow people to publicly disclose their denial, such that we can build a consumer movement that will allow us publicly to put pressure on the attorneys general in the 50 states to investigate any potential denials, if it is revealed that there is a pattern of denials by a particular insurer in a particular way. For example, if a particular insurer is imposing a fail-first model in a widespread way, in violation of parity. Or, if they are more applying a preauthorization for a certain type of care in a more onerous way.
We’re looking at trying to influence parity’s implementation in the most effective way. So, that’s how we get the federal and state regulators to do their job. Frankly, they haven’t done their job, and parity has not been implemented or enforced, because there is no effective advocacy.
What sort of patterns are you seeing in terms of parity not being honored by insurers? What are the most common denials or barriers thrown up by insurers?
Rather than get into great detail, I’d just say that the attorney general of New York has held both Cigna and Anthem in contempt for parity violations. That consent decree is pretty detailed, and anyone can look it up at the New York AG’s website. Essentially, there just isn’t the access in network for available mental health services, and that’s because mental health and addiction services are not reimbursed in the same way as cancer and cardiovascular disease. So, there is a lack of network adequacy, and payers always complain they don’t have enough mental health providers. But one of the principal reasons for that is they’ve never paid for it.
The other thing is they always complain about the lack of measurement-based outcomes. And frankly, that’s true, but part of that is because treatment centers and mental health in general have been reimbursed on a shoestring budget. And if you want outcomes, you have to pay for outcomes, and that means you have to fund treatment, much like we funded cancer treatment for 30 years before we ever got any discernible improvement in mortality numbers.
We need a real wake-up call for everybody. People are talking a good game about what they’re doing for addiction and mental health, but I’m not seeing it. It’s been disappointing to me to see the lack of leadership on the part of major insurers when it comes to helping define what we need to do in mental health and addiction. They’re like waiting to be told. Yet, they’re the ones that have the big bankrolls. They’re the ones that make all the money.
Frankly, when I got out of Congress and I thought for sure there would be some thought leadership, some think tank that would help this country tackle the biggest public health crisis of our time. Because I see it in every other area of advocacy in Washington, D.C., whether it’s the environment, whether it’s trade issues, whether it’s labor issues. You have think tanks, you have people who’ve invested, that come together to try to advance the field.
But it’s shocking to me that AHIP has not stepped up to the plate. These insurers have taken a very defensive posture on this. It’s tragic. This is a public health emergency, and we need a much more proactive and aggressive approach by those that have the money and the wherewithal.
Have you had one-on-one discussions with AHIP or insurance executives?
I’ve spoken to several CEOs of the largest insurance companies in this country. I have several times met with a coalition of insurers and the behavioral health segments of those insurers.
And nothing has come of it?
They say they’re doing this, and they’re moving forward on some areas. But it’s small ball, in my view. Small ball. I know what they are capable of, and you know it when you see it, and I’m not seeing it.
I know I might come off as aggressive on these payers, and I get support from them. I have met with many of them, as I mentioned. I want to work with them. My dad worked with Orrin Hatch. That’s how they got things done.
Which insurers do you get funding from?
Aetna has been a big supporter. In fact, all of them have been helpful. Humana. A little bit from Anthem. I’ve developed relationships with individual Blue Cross leaders. Patrick Conway
We need to see fundamental change. The fact that we’ve got an opioid crisis and we cannot get enough providers out there who have a DATA 2000 waiver, is on the insurers, it’s on the hospital systems, it’s on the AMA.
I don’t know what this waiver is.
That means that they are trained to deliver medication-assisted treatment, which is the evidence-based treatment for opioid use disorder. So, what I’m saying is, you know, they should be collectively helping to marshal the resources, and saying to all of those that are in their networks—not only all their primary care docs, but all their docs—that they need to step up and help us address this public health crisis. It’s not enough for people to say, “Well, that’s not my area of medicine.” Well, I’m sorry. You have an obligation to the public health, to our country. And you need to be part of this solution. You may not have thought of yourself as going into addiction medicine. We’re not asking you to go into addiction medicine. We’re just asking you to do your part for the crisis. Which means you get the extra eight hours of training, you prescribe, and that the payers develop a collaborative care network.
There wasn’t a collaborative care code until we pushed for it. That’s the kind of stuff insurers should have been doing. They should be pushing for the innovations and payment that allow the most optimal outcomes for people with mental illness and addiction.
The big payers were not advancing these types of payment reforms that are directly in their interest and frankly, would help the field, because if you have a mental illness or addiction, what do you need? You need team-based care. You need collaborative care. And, you know, they just haven’t been pushing the envelope on that stuff. They shouldn’t be in a defensive mode. They should be doing it because it’s good for them, because they know it will reduce total cost of care if they treat underlying mental illnesses as depression and anxiety. I mean, it’s the best value proposition for these insurers, is to treat mental illness and addiction. Provided they treat it early.
Do you think the reluctance is just the bottom line or does it have to do with the overhang of stigma about mental health and substance abuse?
I understand. You know, mental health treatment is a problem in itself. At the Kennedy Forum, we call out the insurers for not paying, but we also call out the mental health providers for not providing the evidence-based treatment. If we have to send this care to some out-of-state drug and alcohol rehab that does not practice evidence-based treatment, you know, the insurers have got me as their best friend. I don’t want to see those places in existence. That’s a sign of failure of the system.
Are you thinking about Betty Ford or Hazelden?
No, Betty Ford and Hazelden—both practice medication-assisted treatment. They represent 10% of those new patient providers out there that actually practice evidence-based treatment. I am for inpatient treatment when it’s clinically indicated. And, by the way, the American Society for Addiction Medicine has a very clear protocol for assessing severity, the duration of the addiction, and a whole host of other factors that would dictate whether an inpatient setting is appropriate. But, right now, we’re practicing a one-size-fits all approach to addiction. And a lot of it is the spin-dry inpatient treatment centers that really should not be in existence. A majority of them are not practicing evidence-based treatment. They’re mostly all out of network. I think they’re not doing anybody any good. In fact, they might be actually increasing the risk for people with OUD—opioid use disorder—dying, because if you detox someone with OUD and they go out, you know, their chance of overdosing has increased dramatically.
Is your vision more early preventive care, more medication-assisted treatment provided by, maybe primary care physicians?
And then, for people who need it, evidence-based inpatient care.
That’s correct. You hit all of it right there, Peter. You nailed it.
So, in my case, addiction—it doesn’t just run, it gallops through my family. My grandmother on my mom’s side died at 61 years of age. Really difficult case of alcoholism and depression. My mother suffered from the same debilitating illness.
The way you write about your mom [Joan Kennedy] in your book, A Common Struggle, is so moving...
Thank you. Well, she suffered so much, and it makes me so angry. She suffered from a very real, genetic chemical illness in her brain, and she was constantly shamed and dismissed because of that. And that should not happen.
And your father was an alcoholic?
My dad suffered tremendously. He suffered from post-traumatic stress. And, yeah, we didn’t know what PTSD was when both of his brothers were murdered. I mean, the bottom line is, these illnesses affect everyone.
And it’s surprising to me that the medical system would not have asked me or had a history of my family’s illnesses. Because, you know, we have stroke in our family, we have cancer in our family. But the thing that’s going to kill us are these diseases. And yet, there’s nothing in the EMR about depression. Nothing in the EMR about addiction. Nothing in the EMR about the protocol to ask [about them].
I go to my new physician after leaving Congress. I’m the author of the parity law. I’ve written a best-selling book on addiction. And all my primary care doc can ask me about is my asthma. Are you kidding me? Are you kidding me? That’s where our medical system is today.
Opioids are so much in the news. I think your first prescription was after a car accident.
Actually I had neuroma in my spine, and it was a big surgery, 14 hours. And I have a big scar down the middle of my back. I basically used that scar as carte blanche to get opioids for the rest of my life.
Do you still experience back pain?
Ironically, being in sobriety, I don’t have the same pains. I exercise aggressively.
So, the back surgery was when you were in college?
Correct. But I was already—you use kindling to get the fire going. The kindling was already going as a teenager. I was in drug treatment at 17 for cocaine addiction. I was, you know, addicted to benzodiazepines after that. Xanax. Then I had my surgery. I got introduced to opiates, addicted to opiates. I was addicted to Adderall.
What people don’t understand is that addiction is a disease. But whether it’s stimulants, antidepressants, opiates, is irrelevant. It’s addiction.
Hang on here. The opioid epidemic has taken off, and there is a lot of discussion now about what has fueled it. Whether there were particular pharmacy companies that employed unscrupulous marketing to flood the market…
No question about it. Purdue Pharma, you know, they are as guilty as anybody, right? But the bottom line is that we as a society need to understand addiction, because I’m in 12-step recovery, and I guarantee, the people who have, like me, an opioid use disorder, and they’re recovering, are battling every other addiction that’s out there at the same time. Anybody who knows these illnesses knows that one addiction can replace the other. It’s the disease of addiction in the brain—that is the disease.
Now, opiates are a very deadly and powerful form of addiction. So are methamphetamines, and so are some of these others.
But we need to make sure people don’t misunderstand that, well, if they’re addicted to marijuana, it’s not a big deal, because it’s not as deadly as the opiates, so it’s okay. That’s another fallacy that we’re quickly going down the road to in this country. And, I might add, if people are interested in a way to respond to that, they can go on learnaboutsam.org—Smart Approaches to Marijuana.
Are you worried about the legalization of marijuana?
Are you against it?
Against it, for sure. I am dead set against legalization. Dead set against legalization. Mark my words: In 10 years, people are going to say, “How in the world did we get here?” And it’s another thing that makes me angry with these insurers. Why are they not stepping up to the plate to help push back on this? Because it’s going to be a public health catastrophe.
I can make a very strong case that I’m for decriminalization. I’ve always been for making sure that we do not, you know, treat people as prisoners as opposed to patients. I was the biggest champion for drug courts that you could find. I was the leader on the appropriations committee for drug courts and mental health courts. But I think legalization creates commercialization. That’s what I’m against, the commercialization.
I don’t recall reading in your book about you being a big pot smoker.
No, I had asthma. These days, however, I could eat my marijuana through candies, and I could drink my marijuana through these elixirs. And I could vape my marijuana through electronic cigarettes.
You were on the president’s opioid commission. What do you think of the outcome? You have a blog post about some recommendations that you think are important. One deals with the Department of Labor.
I’m on my way right now, as we speak, to go see Secretary [Alexander] Acosta about how do we step up enforcement of the parity law. I’m pleased that Secretary Acosta has supported that. Obviously, Governor Christie is a big supporter. And we’re looking to get strong support from the administration.
I think that short of government doing its part, regulatorily, it’s going to fall on insurers to make up the difference. So, if I were an insurer, I would be hoping that the federal government actually appropriated what it ought to be appropriating to help address this crisis. Because this crisis is going to spill over on all of those accountable care organizations that take a risk in these markets. Because the more people who are going without treatment for a mental illness and addiction, the more total cost of care each of these insurers and these ACOs are going to have to bear.
I think part of what happens is the cost gets shifted to the individual.
When I was reading your book, I thought about the cost of your care, in and out of all those treatment centers. You were lucky to be a person of privilege.
No question about it.
The way our system is set up, mental illness is treated as an acute episodic illness.
We wouldn’t have the need for so many of these inpatient treatment centers if our primary care docs were doing what they’re supposed to do, if they had the collaborative care applied and the right wraparound support for peer support, for professional support, and if that was tied into the EMR so that no one was falling through the cracks. But, that’s not the way we currently reimburse for this illness.
And then, we rail against these inpatient facilities when, in fact, they’re the default, because there’s nothing else. And I lived it. So, I know what’s going on in the system because I’ve experienced it as a patient.
I think February 22nd is your sobriety date?
How are you doing?
Good. I’m still sober. It’s been over six and a half years.
Are you still taking Neurontin?
I take Neurontin and Lamictal, an antidepressant, and an antipsychotic. Loaded.
A side effect of some of those medications is that they make you drowsy, and for someone as hard charging as you, that would seem to make the side effects intolerable.
Well, I have an addiction psychiatrist. I was fortunate where I live to find an addiction psychiatrist. A lot of people with addiction have co-occurring mental health issues, and if they’re not treated, they’re really at risk for relapsing.
I wonder if we need more addiction psychiatrists.
Yeah, I guarantee you, I mean, I saw a psychiatrist for years, but I was still in active addiction.
Is it mainly CBT [cognitive–behavioral therapy] sort of therapy?
Yes. It’s CBT. It used to be analysis, which didn’t do me much good. Knowing what my problem was wasn’t the issue. It’s how I was going to deal with that problem. That’s what CBT does. It helps you cope by learning how to manage stress.
Frankly, for our country, we need to be teaching our kids in school how to manage their stress. How to do problem solving. What are some coping skills that they could develop? That’s what they ought to be teaching in school. Because these kids can’t learn math and literacy, etcetera, if they’re unable to manage their anxiety, their stress. And that will be good for public health. It’s another thing we should be getting a lot of support for from our insurance companies.
Are you worried about your own kids?
Oh, yeah. They’re all genetically wired for this, as I was. But, of course, it’s a combination of genetics and environment, so I’m trying to do my part not to fuel the fire.
How do you do that?
Well, I love them. I hold them. I just get in there and I just grab them. I just grab them, hold onto them, and kiss them, kiss them, kiss them. I take them to school, pick them up, go to the playground. I look at them, I don’t look at my phone. I put my phone down when I’m with them. I read to them at night. I let them put their head on my chest while I read to them. We have rituals like that.
What are you reading to them?
The transcript of this interview has been edited for length and clarity.
Learnings from the April 2018 meeting.
Edited by Jill Condello, PhD, ICON Access, Commercialisation & Communications