Prescription Coverage Drama and Trauma: It Breaks Me at Times

First, I’ll say it ended okay for now.  Hours later, I’m still feeling vulnerable and sad. Sad at my situation and sad for how much worse it is for many others.  

Step back to this morning at work.  I choked back silent sobs just wanting to get it together.  I’m in my office, standing at my desk and wiping away tears. I’ve just gotten off the phone with my super exclusive specialty pharmacy and copay assistance representative for my disease modifying medication.  I say super exclusive because this is the only pharmacy I’m allowed to use for this medication.  This is the most important medication I take that holds hope for slowing my Multiple Sclerosis disease progression.  It doesn’t cure anything, but it may keep my immune system from attacking my central nervous system as frequently as it would without the medication.  

My health care insurance changed the pharmacy I need to use.  That’s not the problem I’m struggling with right now.  Before it changed, the previous pharmacy phone rep told me that my copay assistance was denied because I’d used up all the funds for the year.  

This morning I was told that after my insurance pays the amount covered by my policy, my one-month supply of medication is $2,317.  Copay assistance provided by the manufacturer of the medication caps at $12,000 per year. The math doesn’t work out in my favor. I calculated that copay assistance will cover 4.8 months.  I need to take this every month, and that’s not even going to cover me for half a year. The rep keeps saying I need to be aware of this when I make an order because I’ll have out of pocket to pay.  

I know I’ll fare better if I stay calm and wait for final answers before getting upset.  My body doesn’t comply, and while I’m polite to the reps, I’m barely getting the words out – “Thank you for your help. What can I do?”

The co-pay assistance rep says she’ll make some calls and find out the balance of my co-pay assistance fund.  She promises to call me back by the end of the day. I thank her and hang up while choking back immanent sobbing.  

This sucks.  I hate that I have to deal with this.  I hate that my health is frustrating and I live in a nation where even with terrific insurance coverage I feel like a burden and at risk of needing to do without prescribed health care.  

My work day continues, and I talk to a few people to continue projects and discuss next steps completely unrelated to the experience I just had. I’m still wiping away a tear during one conversation and tell them, “I’m sorry, I have something unrelated I’m dealing with.” I continue to discuss the project as if I’m okay.

Within the hour the copay assistance rep calls me back and says I still have over $9,000 in my copay assistance fund.  I have no answer for why I was told that the fund was exhausted.  I have no promises that it won’t be a $2,317 debit to that account each month. I’m only assured that I have enough to provide my medication through the end of the calendar year.  For now I’m fine.

If I’m still taking this medication next January, I’ll need to ask each month if they’ve completed the “two-step process.”  She keeps saying this as if I know what that is. I finally interrupt and ask what is involved in the two-step process for ordering.  She explains it’s where the pharmacy determines the amount covered by my insurance, schedules a delivery date and then bills my copay assistance fund. Only then will they know if there is an out of pocket amount I owe and how much it is.  

I asked her if the pharmacy would call me back after knowing the amount due and let me know if my personal credit card is going to be charged beyond what I’m ready for.  She says yes. That’s what I have to go on right now. Best case, it keeps getting covered, magically the $2,317 per month is reduced after the copay assistance program pays, and I can keep using this medication next year.  Worst case, next year I’ll need to pay $15,805 out of pocket above and beyond what I pay for my health insurance.  If worst case comes to pass, I’ll more likely work with my neurologist to see if there’s another medication I can use that is covered or has a better copay assistance program. 

The details and drama of dealing with this is exhausting and stressful, and I’m sick of it.  I share this not to ask for pity or sympathy, but to spread awareness about how life is when living with an incurable disease not of my making. I wish I had the energy to advocate loudly for pharmaceutical medication reform. But it’s just too big and too much for me to do on top of taking care of my health, working full time and trying to live well. I wish I could distract myself with anger, but I’m too tired or not distanced enough to be angry. I hope to be able to do something productive with this.  I hope people sicker and less able to navigate bureaucracy can get what they need to be able to obtain the medications they need without spending down their life savings or declaring bankruptcy.  Even then, I understand our system isn’t likely to provide all they need. 

We need a better system. We need to care for our weakest and most vulnerable. I have insurance, aptitude and patience to deal with this, and it breaks me at times.  

Getting Organized and Staying Organized: It’s a Lifesaver When Living with a Chronic Illness

I love being organized. I love containers and labels. I love having my finances organized and being able to find paperwork when needed. It brings me a sense of peace to plan things, be prepared and know what to expect.  When everything has a place and is put away, it brings me joy.  Living with a chronic illness like Multiple Sclerosis can be the exact opposite of that. It’s unpredictable, it disrupts plans, it can be invisible, and often it doesn’t have a logical reason behind the symptoms it brings. It can be manageable, but it’s not curable.  Unlike my belongings, it can’t be fixed and controlled.

I know not everyone shares the love of organization that I have, but I promise you that small efforts into organizing tasks, time and belongings can make any person’s life less stressful. When keys are put in the same spot each time I get home, I don’t spend any time looking for them when I’m rushing out the door. When household goods like toilet paper are purchased before I’m down to the last roll, I don’t need to make a special trip to the store when I might be tired from a long day or experiencing MS fatigue. When I fill up the car’s gas tank when it’s half full, I won’t be late for an appointment because I needed to refuel on the way. If I bring snacks and water when I leave home, I’ll spend less money stopping somewhere to get them and I can control what I eat or drink. I have the option to get something different, but I won’t be forced to have something I don’t want. It takes less energy to stay organized than it does to deal with the chaos disorganization can cause, and putting effort into organization helps me live with MS fatigue with a semblance of grace. 

My days rarely go as planned.  There’s always something that comes up, and if I allow time for emergencies or unexpected opportunities, I’m less likely to get stressed about it. When my finances and home life are organized, I’m better able to roll with inconveniences instead of them disrupting my entire schedule. With MS, having an exacerbation can put everything on hold.  Needing to schedule doctor appointments, get daily steroid infusions to calm down the immune system, travel to clinic appointments, and focusing on recovery becomes a priority. Everything else gets pushed aside.  If I’m not organized, it can be costly and chaotic.  Bills paid late can incur interest and late payment fees. Missed deadlines can create consequences that increase stress even more.  Stress can contribute to MS exacerbations and symptoms, and it can become a downward spiral for our health.

But it’s hard to get organized in the first place. 

I’ve had my share of shame surrounding disorganized papers and things in my life.  When I inherited decades of paperwork from my mother after her death, I kept a lot of it in the attic.  When money was short, it was hard to stay on top of financial paperwork. As time passed and I lacked a good organization method for new papers coming into my home, the boxes of paperwork stored in the attic grew. These boxes held unimportant paper along with important documents and possible treasured keepsakes.  The idea of going through all of them was overwhelming and easy to ignore if I didn’t venture up the drop-down ladder to the attic. 

Along the way, I bought a book that guided me through tasks to complete to become financially organized.  It had assignments to do each week and promised complete financial organization within a year.  I followed it diligently, and the papers in my home along with my financial tracking became something of beauty to me.  The boxes in the attic remained untouched.  

Then I moved, and something needed to be done. My new home was one-fifth the square footage of my old place. I was embarrassed that I didn’t know what was in the boxes, nor could I recycle or trash them without going through them.  Luckily, I had two friends who never judge me poorly and are extremely generous. They offered to help, and I’m so grateful that I overcame my embarrassment and accepted it.  

I think there were about 30 boxes that we took directly to a friend’s garage.  The following Friday night, we met for dinner and afterward each brought a martini to my friend’s garage where we spent five hours going through boxes.  My instructions were to sort through things into recycling, donation, trash and keepsakes. We would identify anything that might look important and hold it up so I could say whether I wanted to keep it or not. As stressful and overwhelming as the project seemed to me to do alone, it ended up being a really productive and fun evening.  We laughed over old photos, drawings and notes, and we told stories about ourselves.  By the end of the evening, we’d whittled the number of boxes for me to keep down to five that could fit into my new place and be dealt with another time. That weekend, we took the paperwork to shred to a local free shred event, and we dropped off items for donation at a local charity.  Trash was picked up with the garbage within a week.  What would have taken me months to go through and caused a lot of stress became an opportunity to connect with friends and make a fun memory.  

For tasks that need to be done regularly, I prefer to do them throughout the week.  Growing up, my family’s method for cleaning the house was to do an all hands-on deck cleaning session once a week. Sure, we cleaned up the kitchen each night and tidied up after ourselves, but a full-home clean would take a few hours each Saturday morning. I hated it.  It felt like punishment, and it had to be done before we could do anything fun. I learned years later of a method where cleaning could take 15 minutes per day, and I joyfully converted my approach.  Now I use that method for a lot of things I need to do.  I don’t combine everything into one session; I split up chores into small fairly quick tasks. Some are maintenance done daily or weekly, and others are done monthly, seasonally or yearly.  I wish I had a cleaning person, but for now I don’t feel comfortable with the expense. With this approach, I’m able to keep my place tidy and company ready within a few minutes.  This works well with my MS fatigue issues, since accomplishing something in 15 minutes and resting is doable.  Saving it to do all at once can be exhausting, it might limit my ability to do anything else that day, and it might require recovery time beyond the one day.  

How to get organized: There are lots of good reasons to be organized, but that doesn’t always lead to action.  I like the specifics of what I can do to make my life easier.

1. Enlist help. This is especially useful for big projects that only need to be done once.
2. Break up tasks into small and consistent routines. Success builds on success.  
3. Do one thing at a time. Don’t worry about everything, just focus on one thing to improve.  Getting overwhelmed will just lead to inaction and no improvement at all. Any improvement is better than none. 
4. Cleaning in five to 15-minute spurts rather than long sessions can accomplish a lot while accommodating fatigue issues. 
5. Pick the one thing that causes the most stress and focus on how it could be streamlined. The library and internet offer a wealth of suggestions and resources.  Find one that makes sense and try it.  Keep it if it works, and try something else if it doesn’t.  
6. Consider organization as a lifelong component of living well. It might take five years to get each aspect of a life more organized. As life, health and obligations change, so will our organization methods.  

Having control over things in life builds confidence and eases stress.  Chronic illnesses like MS can be unpredictable and suddenly disrupt our plans significantly.  Being organized with belongings and doing tasks as part of a routine ease stress.   Knowing what needs to be done and where to find things makes it easy for friends and family to help us when called upon.  Tasks become more difficult when we don’t feel well, and being organized can allow us focus on our health and recovery. If things are organized and planned, then impromptu things don’t worry me. I can add them without overloading myself. I know for certain that being organized enriches my life and allows me to say yes to more experiences.  

• For information on my financial organization, see Rethinking Wealth & Organizing for Financial Wellness
• For my organization methods, see my post Make Life Easier to Get More Done and Lessen Stress 
• For how I prepare and organize for neurologist appointments, refer to Getting the Most Out of My Neurologist Visits 

Life Goals: Checking in When the Seasons Change

When summer turns to fall, a sense of routine and normalcy seems to return to my life. Kids are back in school, my coworkers and I are done with big vacations, and we’re all ready to get back to work.  This year it occurred to me to start reflecting on this year and planning for next year earlier than usual.  I think this might be a terrific time of year to assess what I’ve accomplished, what I want to accomplish before year end, and what I want to accomplish in my life as a whole.

Much like the beginning of the school year with class plans and schedules, this is a natural time of year to approach as a check in point and beginning.  I usually reflect on my life and create New Year’s resolutions in December and January. It works, but with the holidays and so many extra obligations and erratic scheduling, it’s sometimes difficult to find time.  In September, there’s less of a deadline and more of an organic opportunity to check in. 

My method is pretty structured. Okay, I’ll admit it’s probably extremely structured.  Yours doesn’t need to be like mine at all.  Just stopping for a moment and considering our lives periodically is helpful to prevent one year from blending into the next and time seeming to pass us by.

That said, I’ll share mine in hopes it spurs your own imagination for how you do it differently and might want to modify it.  

I listed things I love and bring me purpose, and I’ve created a vision of what I want my life to be.  These lists have stayed really consistent over many years.  I organize my goals by categories of my life that are important to me. The categories are similar each year, but the goals I have within each category change a bit as I change.  I use these goal items to decide what I’ll do each year to achieve these goals.

Things I love/Purpose:

• Be healthy, organized, prepared, and financially well-off. 
• Enjoy life, make things easier where I can, and spend energy and time on things I love or enjoy. 
• Build and enjoy relationships
• Feel useful, contribute to society.

Vision:

• Be as healthy as I can be. Strong, fit, flexible and energetic. 
• Have a home that is relaxing and company ready anytime.
• Explore interests and follow them. 
• Be excellent with my career and enjoy it.
• Be financially responsible, and prepare for retirement and possible disability while enjoying today.
• Do things now that I want to do and that I may not be able to do in the future if I lose mobility.
• Cultivate good relationships with people I care about and care about me.
• Express myself creatively with photography, art and writing.

Life Categories & Goals: 

• Health & Fitness: Improve strength and endurance. Be consistent with daily fitness, nutrition and self-care.
• Relationships: Call, visit, and connect.
• Finances: Be organized. Purge what doesn’t need to be kept. 
• Home: Continue improvements, streamline things to make it easy to care for and keep clean.
• Creativity: Continue blog and cultivate writing skills, take photos and work on projects.
• Travel/Adventure: See family, explore new places and experiences.  
• Career: Drive the office forward, accept new roles, cultivate working relationships and keep learning.

Plan:  This gets pretty personal, so I’m not going to share my list as is. I will share some of the items on the list to give an idea of how I do it.

1. Visit family, attend my high school reunion, and do a 14er hike. 
2. Write a monthly blog post.
3. Take pictures and organize them.
4. Work on kitchen remodel, try to finish before year end.  
5. Go to concerts, plays and museums. 
6. Maintain financial system, filing, purging and paying bills on time.  
7. Complete health insurance online health assessment to make sure my out of pocket is the minimum possible next year.  
8. See my neurologist and get MRIs annually.  Take medications and supplements consistently.  
9. Have a daily stretching routine and stay active.  Do a mix of short and long workouts weekly.   

Reflecting on my life vision and the goals I’ve set for myself was an extremely motivating exercise for me. Doing it in September instead of December or January allowed me to see how much I’ve done and decide what I still want to do with the months remaining in this year.  It showed me what may need to move to next year or come off the list entirely.

I think putting our goals on paper or in a computer document is a terrific way to see how much we change over the years and how much we don’t.  The thought process of putting a task to things we value in life provides clarity for where we have control in our lives.  For me, it shows how consistent my values and preferences have remained. It feels good to look at how far I’ve come and recognize how much my life has become what I envisioned years ago. It feels great to see that I’ve built a base that makes me happy and may allow me to do so much more in the years to come!

Necessary Medication and Politics: The Devastation Falls on Patients

Last week I received a phone call from my pharmacy telling me that my insurance no longer covers my MS disease modifying medication. One year ago, I read an article about expected price increases for MS disease modifying medications that were insane given the history of MS medications.  Tonight, the President says yet again that reducing high drug prices is one of the top priorities of his administration.  Neither he nor congress (both parties) have made any progress on this with any results.  I don’t know and can’t figure out what the strategy is to accomplish this.  I hope they can, but I fear it will be on the backs of individual patients.  I fear we’ll lose medication options and our doctors will not be at liberty to prescribe what is appropriate for us. While congress and pharmaceutical companies bicker, we as patients will suffer the consequences from lack of care and disease progression.  

The medication I take is one of the first ones to come on the market in 1996.  It came in a dosage of seven injections per week. In 2015 they came out with a version that is three injections per week and has a new patent with all of the benefits that come with precluding generics and competition. Same formula, different dosage.  Both are astronomical expense.  Generic is $60,000 per year. Non-generic runs $73,000-$89,000. My insurance has covered it for the last nine years and has now decided it won’t cover it at all – name brand or generic. All of the other medications cost more.  

I’m now in the position of needing to work with my doctor to try new medications to replace the one that’s been out the longest and has worked for me.  In order to alleviate problems I was having with seven injections per week, I tried two medications a few years ago and ended up with non-stop nausea from one and hives all over my body from the other. It’s daunting to embark on this effort when I have a lot of other things going on in my life to tackle.  Regardless, I’ll do it. Living without proven medications isn’t an option for me.  Hundreds of years have proven that when living with MS going without medication leads to faster disease progression and disability.  It’s not worth the risk.

Know that pharmaceutical companies are making big profits for their stakeholders.  They don’t have a track record of reducing prices to the customer over time. When I started with this medication, it was $36,000 per year. Last year it was $76,000 per year. They claimed years ago that the price would go down once a generic was available, but it hasn’t.  And now, I’m told that my insurance won’t cover it at all. Same medication, different politics.

The medication I take is the least effective and has the fewest side effects.  It works for me. I haven’t had a relapse in six years. Yet now I’ll need to try medications that have higher efficacy and more severe side effects including liver damage and even death for some.  It’s scary and I think reasonably so.  My approach has been to take a medication that works with the least side effects.  Insurance is not going to allow me to do that anymore. 

I have three months of medication in my refrigerator to tide me over. I have this because over the course of two years I've stretched my medications to allow a stockpile.  I'd prepared for emergencies and wanted to be covered if I wasn't able to get my prescription filled. I’ll see my neurologist in a few weeks and will discuss my options.  Until then, I’ll do my research to see what my options are.  Options I’ve identified are:

1. Appeal the insurance decision.  I appealed and won a couple years ago.  It took six months with no guarantee that I would win.  I went without any medication for six months. It was worrisome and frustrating, and that’s not conducive to good health when trying to reduce stress.  I did it, but I’m not sure I’m up for it again right now.
2. Go without medication.  Before these medications were available, people with MS were likely to be disabled needing walking assistance within ten years of diagnosis.  I’m at year nine and doing well. Going without is not an option, and I don’t think I should be expected to go without.  Please also know that cost of care for me will be much higher if I’m in a wheelchair, can’t work and live with all of the associated health problems that come with disability. 
3. Find a new medication.  I’ve tried two in the past that caused such misery they were not an option for me.  Insurance companies want to treat all patients the same, and we’re just not.  What works for one person doesn’t work for another.  What helps one person causes severe side effects for another. We need to keep trying different medications each time one doesn’t work, and we hope we don't run out of options.  One I tried for nine months before giving up. Another took six weeks before my body broke out in hives and I had to cease taking it.  Each time I try a new medication, it takes months to get approved and use it before I’ll know if it’s going to work for me.

I’ll work on finding a new medication.  I’m frustrated and not looking forward to this.  Yet, here I am.  I work, I have good insurance, and I live in a prosperous country.  I should be in a good position on this, and I get that I have it better than a lot of people on earth.  But don’t overestimate our good fortune in the US.  Other countries have figured this out better than we have.  Let’s learn from them. Enough said.

On February 28, 2018, I wrote a follow up post. Read Part 2 of my pharmaceutical medication denial and decision reversal Necessary Medications and Politics: Part 2