CMS, Rescind Your Policy to Restrict Access to Mental Health Care: Our Voices are Being Heard

LarryDrainToday’s CFYM post is all about sharing your personal story. Learn how three DBSA peers traveling to Washington will share your comments from the past two weeks with Congressional Representatives. Read what affect another peer thinks the proposed CMS regulation to restrict access to quality mental health care would have had on his recovery.

For the past two weeks, CFYM has informed our readers on the misguided decision by the Centers for Medicare and Medicaid Services (CMS) to restrict access to quality mental health care. Over the past several weeks since the CMS announced a proposal to eliminate antidepressant and immunosuppressant medications from protected class status, many citizens have taken up the call to make their voices heard. As a result, last week the Senate Finance Committee sent a letter to Marilyn Tavenner, CMS Administrator asking that the regulation be rescinded. All 24 members of the Finance Committee signed the letter. Reporting on the action, BioCentury reported that the letter states “If beneficiaries do not have access to needed medications, costs will be incurred as a result of unnecessary and avoidable hospitalizations, physician visits, and other medical interventions that are otherwise preventable with proper adherence to medication,”

Democracy In Action

This week the Depression and Bipolar Support Alliance (DBSA) will continue this exercise in democracy as three peers visit Congressional Representatives who serve on Committees that have jurisdiction over CMS. They will take your comments with them to the meetings. Dr. Rev. Cheryl Magrini will share your concerns about comorbidity. Mike Dostalek will share that through working with his doctors he has been able to find a formula of medications to support his wellness that combines brands and generic medication. Chelsea Miller will relate how her recovery would have been in serious jeopardy had she been forced into a “fail first” treatment strategy. All of these stories have one thing in common—peers and doctors need to be directing their treatment programs—not bureaucrats. Larry Drain, a Tennessee peer, illustrates that point very poignantly and powerfully in today’s post.

A Peer’s Story

I remember the day I thought I was going to die. I was on my way to work and I knew that if I went one step further, one inch further I would die. I didn’t know how or why, but I knew I was going to die. I stopped my car and cried.

It was a state of total, overwhelming terror. I will never forget it till the day I die. More than once in the middle of it all I wished I was dead. Everything important to me seemed to be gone and the future simply a black hole.

It took months to climb out and find life again. Instrumental in that was the ability of a doctor to prescribe medicine that based on his experience he thought might help. It did. And I am so thankful it was there. It was a relatively short term thing for me. But without it there probably wouldn’t have been a long term. Since then there have been other parts of my life where medication has played a critical role.

There is a proposal to change the way psychiatric medication is prescribed for those on Medicare Part D. It is bad medicine. Historically changes in Medicare become changes in other insurance policies. The policy would remove antidepressants and antipsychotics from what is called a protected class.  It would mean that doctors can no longer prescribe what they think might work, but must first prescribe from a shortened list of available medications. It amounts basically to the same medication for all. Anyone who has ever taken medication can tell you the folly of that. One size doesn’t fit all. If I had to have a documented failure on what didn’t work in order to be prescribed what works, I might not be here now.

Cookie cutter medicine is a bad idea. Contact CMS today. Tell them this is a bad change. TELL THEM WE NEED NO MORE BAD MEDICINE!

Your Turn

Describe the role of medication in your recovery.

  • How many efforts did it take for you find the right combination of lifestyle and medication?
  • Are you still searching for the right combination to aid in your recovery?
23 comments
Mary Adamek
Mary Adamek

I have had depression most of life (I am 69 yrs old). Prozac saved my life and sanity. Over the years that didn't work for me and had to find another drug. It took several months and hospitalization to find another combination of drugs. Years later I changed to Cymbalta which is working very well for me. Cymbalta is very expensive and so are any other new drugs. Cookie cutter drugs would not work for me. I do not understand why insurance companies think they know better than the doctors who know ME and work with ME!!

My husband has dementia and I am his caretaker so it is vital that I have the medicines that help me.

Stephen Bonin
Stephen Bonin

I am diagnosed Bipolar Disorder, GAD, and Narcissistic Personality Disorder.

My story involves buried trauma, keeping up appearances, finally losing significantly, then entering a lengthy period of chaos, crisis and confusion. After that, gradual evening out, and now, stable and thriving.

From 1987 to 2001, while married, I was on one mood stabilizer, but buried trauma would rear its ugly head.

In 2001, I asked my wife ( a good person) to leave. My parents, thinking it was the mood stabilizer's ineffectiveness, drove me to a new psychiatrist. But my emotions were in shambles, and I tried to commit suicide after getting out of an inpatient feeling distraught with LOTS of med.

I was released from my gave my 13-year teaching career in 2003, Anger had been a major problem.

In 2007, I started digging into the buried trauma by taking away from DBSA and participating in Celebrate Recovery. Different meds were being tried. In October, 2013, major ground was broken with the NPD diagnosis. Medications work better than ever.

I forgive myself and others for the past. I am grateful for life, and loved ones.

Phyllis Devonish
Phyllis Devonish

what politician do I contact regarding these proposed changes???

Joan Schmidt
Joan Schmidt

Even though I am currently only 63 years old and not yet dependent on Medicare Part D to help fund my bipolar medication regimen, the prospect of having my access to mood stabilizers and antidepressants restricted in the not-too-distant future terrifies me. In the past 15 years since I was first diagnosed with rapid cycling bipolar disorder, I have taken no less than 10 different mood stabilizers and antidepressants in an effort to get my symptoms my symptoms under control so I could continue working and have some stability in my life, instead of bouncing back and forth from the pleasant highs of hypomania and to the depths of depression. I had to work-I had no choice, because my husband and I were both dependent on my employment to have health insurance. If I went on disability, my husband would have been left without any health insurance, because he had pre-existing conditions and would never have been able to afford health insurance in the world before Obama Care.

Since my husband died of liver cancer last year, my medications needed to be adjusted once again, so that I am now on Seroquel XR, one of the most expensive psychiatric medications available, in addition to Carbamezapine ER and Bupropion XL. According to my pharmacy, the full cost of my current medication regimen without insurance would be $1300 per month. How many people, retired or other wise, can possibly afford to pay such high drug costs each and every month? But I've tried virtually every less expensive bipolar medication regimen available and, for me, they just didn't work. Both Carbemezapine and Depakote are anti-seizure meds now approved as mood stabilizers. I'm sure Depakote is less expensive, but, for me, in combination with Zyprexa, Depakote left me living with not only mood swings, but also with a fifty pound weight gain that led to the development of arthritis in my knees. All mood stabilizers and antidepressants are not equal, not only in their effectiveness, but also in their most common side effects, which can not just be "unpleasant," but can also cause major health problems such as the development of diabetes. I fear the formulary of approved psychiatric meds being developed for use by Medicare Part D recipients will be driven primarily by cost and nothing else. Lithium is cheap and was the standard treatment for bipolar disorder for years, but now we have numerous alternatives with far fewer side effects and less danger of toxicity. I tried Lithium and I couldn't tolerate it. If I'm told Lithium is one of my only options for the treatment of my bipolar disorder once I turn sixty-five and am dependent upon Medicare Part D, I prefer to take my chances and not take any bipolar meds at all.

Kurt Wilkens
Kurt Wilkens

Suggestion based upon my experience, strength, and hope. At one time, "hopelessly" enthralled by the description obsessive compulsive disorder and major depressive disorder. Began practicing neuroplasticity as suggested by Jeffrey Schwartz MD in his book Brainlock and began practicing functional medicine as described by Dr. Mark Hyman in his book UltraMind Solution. I had a severe description of ocd. I had a severe description of mdd. I am on no medications of any kind for any medical condition or psychiatric description. Similar stories that have inspired me can be found at nmhrc.com, national mental health recovery center Just a suggestion, worked for me and my history suggested that I was a "hopeless" based upon my extensive history of hospitalizations. Sincerely, Kurt E. Wilkens

Cheryl Magrini
Cheryl Magrini

On Wednesday, February 13, I met with five Congressmen advocating that they use their influence over CMS so that the proposed CMS rule on restricting access to mental health medications would not be voted into a finalized standing rule. I shared my personal story of how the comorbidity of my physical health of migraine, fibromyalgia, and an auto-immune illness along with bipolar disorder must be treated in an integrated way. Currently, I am fortunate that my doctors are able to do so. I also shared that bipolar medications impact the brain, my symptoms, and thus my entire quality of life. My husband and son are the center of my life. Without my doctors having the choice of the most effective medications when I need them, not only will my symptoms worsen, but my family would suffer as well. My message to CMS - "I am an individual with the right to the highest quality and access to mental health care possible. I urge you on behalf of myself and the 21 million in the United States who live with a mood disorder, do not pass the final ruling."

Mel
Mel

If the government and insurance companies continue to tighten the reigns on prescriptive medication coverage, I'm afraid the mental health community will suffer greatly. Every patient requires a specific, unique treatment plan. What works for some won't work for others. Psychiatrists are trained to diagnose and should be allowed to prescribe medications that can best treat the patients symptoms. I recently was prescribed a medication by my psychiatrist that was not covered by my insurance. As a result, my doctor had to prescribe something considered "similar" by the insurance company. However, my doctor warned me that he wasn't fond of that particular medication because of the side effects. Sure enough, I started having palpitations so I needed to stop it. There is no way that medication would've worked for me. Now, I have to pay a lot of money out of pocket in order to get the correct medication which gives me no side effects. It's as if the insurance companies and Medicare/Medicaid aren't concerned with best practices and positive treatment outcomes as much as they are concerned about saving money. If patients are forced to take medications that give them negative side effects, there will be an increase in noncompliance and subsequently an increase in suicide, crime and hospitalizations. This is not right.

Tasha
Tasha

I am still trying to find the right combination of medications. If they go cookie cutter I am not sure things would be decent for me.

Carol Storey
Carol Storey

After 54 years of living with bipolar disorder, I find it hard to accept your decision. This isn't just about me, but it is about the tens of thousands of children and adults who struggle daily with mental disease. Along with all that we are learning about shooters and other perpetrators and those suffering and dying from addiction it seems that we should do more and not less. I plead that you change your minds.

Marilyn Rice
Marilyn Rice

Please rescind this policy ! If I had not had access to the different antidepressents and

antipsychotics, I'm not sure I would be in recovery today. Through trial and error, I have tried so many different medications, some which did not work and some that only helped for a short time. Luckily, my doctor and I have found a good combination of drugs that are working right now. However, this took many years before finding this combination. What if they stop working? What medications will be available? Have I already tried them and they didn't help?

What would I do? I am a person who needs medications to help maintain my lifestyle. I'm sure there are many people out there with the same questions that I have.

Passing this bill will change the way we manage our illnesses and go back to the dark ages of constantly being in and out of the hospital!

Kimberly Allen
Kimberly Allen

I am totally against the Center for Medicare and Medicaid Services proposal for many reasons. In terms of my own story, I can say that despite many significant attempts to stay well on my end, and despite understanding that medication is virtually non-optional in my case, I also struggled with the “reduced adherence” that came from repeated efforts to find the right combination of brands and generics that now support my wellness lifestyle.

Like many Medicare and Medicaid beneficiaries, I have certainly engaged in more than one hospitalization that I now feel were unavoidable. My adherence to insurance formularies and benefit limitations compelled me to “narrow treatments” or “switch treatments” and did not allow me to receive appropriate medications from the beginning. Ultimately, I had to persist in a diligent fashion to learn the pros and cons of medications I needed to take. Over a very long haul, a family member wound up paying $46,000 out-of-pocket for just one hospitalization so I could receive appropriate health care. Expense is one reason I am no longer willing to “narrow treatments” or “switch treatments”, as not only am I directly impacted, so are those around me.

In my professional life, I am a licensed insurance agent, licensed drug and alcohol counselor and ex-Administrator for a dual diagnosis treatment facility. As such, I know the present climate of budget cuts and have made numerous attempts to help Medicare and Medicaid beneficiaries gain approval for appropriate medications. Like me, many of these individuals demonstrated significant attempts to stay well, yet ultimately it fell to me to explain that even our healthcare providers were unable to get them approved for appropriate medications.

Before this proposal is passed, I would ask CMS Administrator Marilyn Tavenner to sit down and hold such heart-wrenching dialogues. Or, if it makes more sense to her, go back and measure the cost of on-going recidivism. Meanwhile, the Senate Finance Committee will try to support us as we carry the heavy tree of stigma and expense and face the deadly shadow of restricted medications.

cherrie mullen
cherrie mullen

In '07 I was diagnosed Bipolar 1 with Schizoaffective disorder.

I cannot be without medication; the repercussions are unthinkable, and I can't imagine what my family would go through. It took me more than ten months to find what I'm currently taking and I'm not even what doctors call stable.

My medications are the very least of my problems.

Chrystal Baird
Chrystal Baird

It took me 5 years to get the right mixture of medications to bring me back from severe depression. I Never want to feel that way again. It was devastating not only to me , but also my family. The only thing that separates me from that pit of hell is the meds that I take everyday. Antidepressant meds are crucial to my sanity.

Leslie Vandervort
Leslie Vandervort

I wanted to die. So, I got in the car and drove over to a small private mental health facility. I waited for a while, but then was greeted by a kind social worker who said she'd be happy to meet with me and figure out options for me.

Do you know what's truly amazing? I quickly learned that my insurance didn't cover that particular psych ward, and the social worker knew it. Compassion and empathy poured from her enough to spend time with someone who was not even her patient!

My diagnoses are Rapid-Cycling Bipolar I (with psychotic features) and Panic Disorder.

I currently take an antidepressant, an anticonvulsant, an anti-anxiety med, and sleeping medicine. I'm convinced, without a shadow of a doubt, that if I have to stop taking my very precise prescription regemen because CMS does not feel like covering it, I would have no choice but to escape the pain by suicide.

My family are soon to become homeless, just waiting for my disability claim to be accepted. I can't work because of the impact Bipolar has on my life. I also need to get Medicaid to cover the cost of insurance.

It took over 20 different psychiatric drugs for me to feel somewhat stable. It's alarming (to say the least!) that there will only be a "select few" in each protected-class category of psychiatric drugs, according to Medicaid Services (CMS).

Please say no to restricted access to quality mental health care!

Tammy hampton
Tammy hampton

My story starts in 1998 I was prescribed my first anti depressant which did not help so I quit taking it and didn't go back to the dr for a couple years till I was a lot worse we tried new antidepressants I got upset when again medicine failed so again some time by and I continued to get worse so back to the dr and again anti depressants were prescribed again they didn't work as they were trying me on different kinds of medications I ended up in the hospital with side effects at this point my general dr refused to treat me further until I saw a specialist to take care of my medication so I did and that was in 2004. So in between 2004 and now I've been off and on meds and as of today they still haven't found medication to help me were still experimenting trying to find the magic combo of medication and I'm in therapy and do weekly dbt therapy plus EMDR therapy weekly and a trauma survivor group that is weekly so putting us on a first choice medication list will further prolong our suffering and cost more in hospitalization and can potential increase sucide due to the frustration of finding the right medication in time to provide relief some people may give up sooner when the first pills don't help finding themselves as truly hopeless and add to the belief that no one can help this is bad medicine no matter how you look at it frustrating for patients and drs and hospitals. I might add that since 2010 I haven't be able to work so now I'm a statistic on disability hoping with every month some miracle will happen that I will be better to go back to work and being part of society again looking forward to being able to leave the house with anxiety attacks and panic attacks

Joe Herman
Joe Herman

At a mental health forum in our city, a psychiatrist on a panel was asked how he knew what the right medications were to prescribe for a client. He replied that it is like an art form to get the right combination. Imagine asking an artist to paint a beautiful picture of a sunset but can only use the colors brown, green, purple, blue and black . . .

Katherine Collins
Katherine Collins

Recovery from mental illness is so individual, often requiring trial and error for many months to find the right medication or combination of medications. To limit the list of medication that psychiatrists can prescribe only further frustrates an already lengthy process, resulting in greater suffering among patients. Please contact your Congressional representative and ask that they repeal these proposed changes.

Megan Grayce
Megan Grayce

I have BP II, MDD, GAD, PTSD. I was in law school when all of a sudden I thought I was going crazy. I couldn't function and cried all the time. I went to a Dr who prescribed several medications. I was able to graduate and pass 2 bars the first try. I have had many bad incidents over the last 25 years where I had to tinker with or change medication to get back to a functioning state. If I couldn't have done that, I would probably be dead because my brain sees suicide as,a viable option, even today. I might have been on SSDI years ago. I certainly would have been homeless waiting for approval. I fought going on SSDI for over 20 years and did my best to work. 2010 I lost that battle. Went through every dime I had still resistant to on SSDI. I became homeless in 2012 and had to admit I needed SSDI. If I did not have access to medication options, trying this, trying that, until I got some relief I would be dead. MENTAL ILLNESS IS A DEADLY DISEASE! It is unconscionable to do this. This would never happen with heart disease or cancer.

Marlena Morton
Marlena Morton

I didn't check the follow-up boxes. Can I do that now?

Marlena Morton
Marlena Morton

I was diagnosed with bipolar disorder in 1990 approximately, then schizoaffective disorder two years later. I can't remember all the medications that have been prescribed for me, but my doctor is still tweaking them. My medications have included Depakote, Risperdal and Effexor. Today I take Latuda which is a newer medication and is definitely not available in a generic form. Latuda was prescribed for me after I was delusional, thinking that I was in the witness protection program. I went on a road trip thinking that I was avoiding hit men who wanted to kill me. I was pulled over for speeding, then while detained, I took off. I was arrested for obstruction and resisting arrest. I spent two months in jail in a small town far from home. While in jail, I received no psychotropic medications for my condition and I continued to be delusional and hearing voices. Since that time my doctor has me on venalafaxine (generic for Effexor), depakote, and Latuda. Since this combination causes me to sleep fourteen hours a day, he prescribed Wellbutrin which increased my alertness, but caused my liver enzymes to get too high. He took me off the Wellbutrin and has now prescribed Nuvigil, a medication used in the treatment of narcolepsy. So far, so good.

This is how my life has been. I can be stable for awhile, then either go manic or delusional. I need my physician to have options, so I can get treatment that works. If the proposed changes to the formulary take place, will my current medications still be covered? If my symptoms change will he continue to treat me knowing that I am on Medicare and he would have to do a lot of additional work, such as step therapy to treat me?

This concerns me very much.

Jana Leeney
Jana Leeney

I am a person that has Bipolar 1 and panic disorder. This can not pass, It would be devastating!!! It took me over 3 yrs to get the right mix of meds to keep me somewhat stable! , The first set of meds made me very ill; If I were not on these specific meds for Bipolar, I'd probably be back in the hospital. These help keep me alive, along with therapy. It's so important not to have this pass because every person's illness is not the same, every body is not the same. It's just like someone with heart disease or any other disease, not all can take the same meds,