It took ten years for us to find a medication regime that not only works to help manage the symptoms of my son Ben’s schizophrenia, but that he is willing to take consistently. Ten years. Three of those have taken place after where our book, Ben Behind His Voices, leaves off – in what one reader calls “open-ended hope.” At that time, Spring of 2011, Ben was in a group home, stable for long enough to begin to piece his life back together, but still finding any possible opportunity to “cheek” his meds. He hated taking them, didn’t think he needed them, was discouraged by the side effects.
Finally, though, a few months after the book was published, Ben had a relapse (see Revolving Door post) and it took a lot of teamwork to get him back on the meds that work – teamwork that included Ben himself, and that’s why it was effective.
What helped Ben to agree? There is a different form of one of his meds that was much easier for Ben to swallow, literally, and that he swears has no side effects. This is a liquid suspension that has to be created by the pharmacist. Does it have fewer side effects? Who knows? But Ben believes that it does, and that’s what matters. He felt like – and was/is – a part of the decision that affects his life every day. The empowerment is definitely a contributing factor in Ben’s adherence to his medication regime.
And now, the main medication that Ben takes is no longer covered by Medicare. At least not in the formulation that Ben is willing to take, in the formulation that he can tolerate. In order to save money, they will not cover the extra ingredients needed to create the liquid version. Pills do not work. He cannot take them, physically or emotionally. Without this specific form of his meds, Ben could lose every single thing he has fought for so long to achieve. His job. His social life. His car.
The result of the stability of consistency with his treatment? Ben has continued to rebuild his future; in fact, he has far surpassed the modest hopes presented at the end of my book. Yes, despite the severity of his schizophrenia (many doctors told me that his case is “very severe”), Ben not only continues to attend community college, but now has held a job as a restaurant waiter for ten months! He is one of the best waiters there, the only one who has customers come in and request to sit in his section.
He, also miraculously, has started to have a social life. He has friends. And he is driving a used car that he saved very slowly for. It’s not fancy, but it has added to the fact that he is now feeling like a man. Though he now lives with us, he has earned the position of no longer feeling embarrassed by his life. Sure, he has to be home twice a day for us to supervise his medication, but it’s a small price for us all to pay, for the fact that he is feeling good about himself, realistically, for the first time in forever.
All it takes, as we know all too well from experience, is two days without his treatment and he will be back in the
Emergency Room, waiting for a bed in the psych unit. (This has happened eight times before. Trust us. Only two days to go from employable to certifiable).
So – I offered to pay for those extra ingredients myself. $80 per month. Not so bad – for me. But what if Ben were alone, no family to support him, living on the meager disability payments that are supposed to cover room and board but do not? Do you think he could find $80 per month? Can others in that situation? No. So the result would be: not taking the medication. It’s one step off a very steep cliff – and the fall is not pretty.
Unfortunately, my relief that $80 per month (challenging to find, but we’d manage) would solve our problem was short lived. The pharmacy called back to tell me that it is illegal to charge me for part of a medication. We have to pay for the whole medication – hundred of dollars per month. The only other choice? He has to take the pills, and Medicare will only cover one formulation of those: the ones that Ben finds impossible to swallow. We do NOT have hundreds of dollars available per month after bills are paid. Most families don’t. But what choice do we have? This is NOT FAIR – to Ben, or to us.
Why did Medicare make this coverage change? To “cut corners”, to “save a few bucks.” But, in doing so, they are risking – no, endangering – my son’s life.
How stupid and shortsighted can you get? While Ben is not violent by nature, others with untreated schizophrenia can be. Or their intentions are good, but the “voices” convince them that violent actions will lead to the good outcomes they desire.
How many shootings in movie theaters do we need to know that we need to provide treatment for mental illness? How many news stories of untreated schizophrenia (despite desperate families begging for hospital beds, enough days of help, enough support for staying in treatment and taking steps to recover one’s life and dignity) does it take to get smart? To provide support for a chance at recovery?
When mental illness goes untreated, lives are endangered. The lives of those living with the illness (who wind up in jail, homeless, or dead), and the lives of those they could hurt in the attempt to obey their hallucinations. Aurora: untreated mental illness. The attack and suicide of Senator Creigh Deeds’ son Gus: no beds available in psych units for the help they begged for. Virginia Tech shootings, the Unibomber’s plans, the list goes on and on.
Treatment could have helped them. Treatment could have prevented tragedy. Saving pennies is not the answer. Provide treatment, structure, community, and purpose: the four pillars of recovery I will explore in my next book, Ben Beyond His Voices.
Meds alone do not change lives challenged by mental illness. But, for many, they sure do help provide the stability that is needed to rebuild futures. Take this away from my son – or even change the routine – and his carefully structured rebuilt life can come tumbling down faster than you can say “tax break.” Too many federal and state budgets are cutting mental health funding to make the numbers look better. And look at what happens every single time you try that ploy. Lives are lost, and much more money is spent on the tragic results of this lack of foresight.
Prevention is cheaper than tragedy. Medicare, Don’t be stupid. Let my son, and others like him, have the treatment they deserve. Give him back the meds that work. Let him continue to be the taxpayer he has fought so hard to become.
This powerfully written article needs a very wide audience. I’m sure other people are encountering similar problems.
Thanks, Susan. Feel free to share away. The more people that share this, the wider the audience will be. Continue doing the great work you are doing!
Best,
Randye
Wonderful article. Can you pay for the script then summit receipt for reimbursement for all but the $80? Is there an appeals route? Will the manufacturer give him the meds for free? Many companies will, I think there’s a form he can fill out at the pharmacy. Send the manufacturer a copy of your article and become a spokesperson for them. Just a few suggestions. You’ve got the brains and the talent to change things.Go get em’ girl.
Thanks so much, Andrea. We are trying several of these options, including a call to the insurance by Ben’s psychiatrist, and of course are hoping for success. But I want to also make the larger point that this policy should be changed. There are way too many other people- those living with the illness and those who love them- who are now in the same situation, and who don’t have the strength and the time and the wherewithal to fight the fight. For instance, even if my son had an extra $80 per week (actually, as we found out, he’d need a lot more than that), would he spend it on meds he’s not entirely convinced he needs? Especially since after missing even one day of treatment, whatever logic centers have encouraged him to keep taking his medication would be buried under returning symptoms?
I am so grateful for the support and education I have sought and found re mental illness: NAMI, NIMH, books, conferences. Without these I’d probably thrown up my hands is despair, confusion and desperation years ago. But too many have not found the path to hope yet, as I have fought to do. What about them? There should be no obstacles blocking the way to treatment.
With that said, your suggestions are excellent and I thank you! Other families will benefit from having read your comment, I am sure.
I hope that you, and anyone who agrees that actions like these penny-pinching budget cuts are ridiculous and potentially dangerous, will share this article with others and spread the word.
Thanks again!
Randye
The inability to get the meds that help is widespread. My partner is on an anti-depressant that also helps her fibromyalgia. She was switched to generic, and this was under really good insurance coverage at work. She went downhill, became suicidal, and with a lot of help from our therapist and doc, were able to get her into the hospital. Now, even with insurance, we’re talking 4 days hospitalization. Guess what? Although there are no therapists or docs on duty during the weekend, these days are still part of the 4 that DRGs allow. “Stabilized” meant taking the meds, generic, as prescribed. Home by Tuesday, another attempt, ER, hospitalization again. Maybe not so stabilized. Ok, this time, they figured out the generic, for her, cannot replace the brand name. Seems one of the nurses told my partner that the generic only has to match around 75% of the original. Docs okayed, both the hospital and our private psychiatrist and therapist. The day we leave the hospital we stop at the pharmacy to pick up the prescription, for brand name. They gave us the generic. They don’t stock the name brand. Lots of phone calls, finally we can return and pick up the right meds. Since then, it’s the same problem every month, pharmacies having to special order the brand name, delays in delivery, phone calls from docs to pharmacy, to docs for samples, if possible, while waiting for the new script. Did I mention the brand name runs around $500 a month? Big pharma, insurance companies still have the lobbies and power in setting policies, so much is stupid Randye.
Laura
We have been lucky enough to have been able to keep our son under our health insurance with his medicaid as a backup. So far we have managed well with his medications when he is compliant. Now he has been informed that he qualifies for medicare due to his part time job. Our insurance will no longer be his primary insurance. He is 25. We have to figure out what is the best way to go with the medicare. Does he go with one of the HMO plans or with straight medicaid? Anyone have suggestions? He is on a monthly injectible that the doctor wants to give to him every 3 weeks instead of 4 weeks to see if that will work better for him without worse side efx. He has already tried many medications and he is extremely sensitive to the side effects and will not remain compliant with the treatment. I know we will be in for a struggle to get that paid for. We’re in NYS. We don’t want him to finally have a medication treatment that he agrees to and the insurance company will refuse to pay.
My son has been covered under our family insurance with Medicaid as secondary insurance. Due to his part time job, he has now qualified for Medicare. His medications have been covered well by both insurances. Now, even though he is not 26 yet, he will have to go on Medicare. He is in the hospital where they are trying to get him on a medication treatment he will accept. The doctor is going to try a monthly injection every 3 weeks instead of every 4 weeks and I know we will have to fight for this with the insurance company. Mental illness treatments do not work the same for any two people and when there is a treatment that works, it needs to be available to the patient. Insurance companies have to see that it is cheaper for them in the long run. My son has tried many treatments and has not been compliant unless court ordered. His treatment team is trying very hard to find a treatment that he will continue to take with the least amount of side effects. Do you have any recommendations about whether taking the straight medicare vs. an HMO medicare for a patient with schizophrenia?
Hi Gail, thanks for your comment. I wish I had an answer for you about Medicare. My son’s benefits are coordinated by one of his case managers with expertise in that area. I try to be as involved as I can (have spent many an afternoon at the Social Security Office), but these matters are detailed and an expert is your best bet. Does you son have case management? While he is in the hospital, ask them for follow-up suggestions. There is often a social worker on the team. Hope that helps a little. Stay brave, Randye
Thanks Randye. I’m going to see if there is someone at the hospital who can help advise us.I’m also going to call medicare and see if they have an advisor in the area. It gets rather confusing and we don’t want to make a mistake.
Gail