I have mentioned many times that I love the new heart failure drug Entresto. It is a great medication that is making me feel better, and I am enrolled in the manufacturer’s Central Support Program. The program pays part of my co-pay and provides helpful information about managing heart failure.
About a month ago, the program sent me little notebook entitled “My Daily Journal of Health, Heart and Hope.” The letter that came with the journal pointed out that while heart failure is a physical condition, “managing it can also take a toll on you emotionally.” I can verify that this is true. My well-being tanked when I was first diagnosed with heart failure. I did not know what this condition was, it had a stupid and misleading name, and I felt awful. I didn’t have the journal six years ago. But I did have personal support network of family members, friends, a church community, a talented medical team and a penchant for discipline and routine.
My own support network and my own organizational skills were instrumental as I developed a management strategy that worked for me. In reading the letter that came with the journal, I realized that I was already doing what it recommended: I created blog posts as my own journal of my heart failure journey, and it helped me organize, research and develop solutions with my medical team for my issues. Most important, the blog helped me to realize that there was a lot more progress going on and a lot less anxiety than when I first received my diagnosis. Or as the journal says: “Over time, you’ll come to realize that progress is made by taking one step at a time, and that small steps can add up to big gains.”
The journal has helpful prompts on some pages to provide ideas for those new to writing a journal: start wherever you like (don’t worry about grammar spelling or sentence structure); let your senses guide; If you think it, write it (keeping track of things you want to ask questions about); explore emotions (what have you done that makes you happy); and reflect on your words and evaluate what has happened since you started the journal.
On the first day, the prompt says “even small efforts can make an impact, with the suggestions being a decision to take the time to organize my meds.” Obviously this is an important task that has huge consequences. But then I started to pick up on a theme, as the majority of the prompts relate to refilling, organizing and taking medications. Were these prompts provided because the makers of Entresto pay some of the costs and so they have a vested interest in making sure patients in the program take their meds? Or is there actually more going on here?
I recalled stories I have heard of people with heart conditions who decided to discontinue their pills. One patient believed it to be an inconvenient burden he did not want to bear any more. In another case, the person declared he did not have heart failure and stopped taking medications. In the first case, the person died because he was not treating his heart. Will the second person have the same result?
I searched the Internet to see if the issue of patients not taking their medications was significant. The answer is yes, and there is even a term for it: medication non-adherence. So this may explain why the Entresto support program focuses on making sure that you can get your medication (by helping out with the co-pay) and that you then take it (providing tools like a medication tracker and journal prompts).
Reading about medication non-adherence shocked me. I mean sure – I would much rather not have to take pills to treat my heart failure. But even with the pesky side effects (low blood pressure, high potassium), I believe the last six years with heart failure have been better than I expected because of theh medication that treats my symptoms. Yes, I still get short of breath, but how bad would it be if I was not taking a mild diuretic, a beta blocker and Entresto? I still look healthy enough that people would swear I’m normal (whatever that may be). I even think I’ve become more feisty and energetic since I started taking Entresto. The meds help me to reach a reasonable, toned down replica of the old Melanie. But I know for certain that the medications have no chance at all to work if I don’t take them.
One of the articles I saw about medication non-adherence was a December 11, 2017 article by Austin Frakt in the New York Times entitled: “People Don’t Take Their Pills. Only One Thing Seems to Help. Reducing the Cost of Medications. “ When I look at my insurance plan for the actual price of the medications I take, I am always shocked at how much they cost. Fortunately, my insurance covers a lot of the cost. Novartis pays almost all of my co-pay for Entresto, and I suspect Novartis picks up a lot of the costs for other people in the program. Yet the program still reminds us to refill, organize and take medications. So I’m not convinced that reducing cost of medications will solve the non-adherence issue.
I found an October 16, 2015 article on the American Medical Association website entitled “8 Reasons Patients Don’t Take Their Medications.” It said that medication non-adherence is fairly common, especially among patients with chronic diseases. Of course these are the patients who need consistent, steady treatment the most. While cost was one reason, the other 7 reasons were: fear of potential side effects; misunderstanding the need for the medicine; the nature of side effects; the time it may take to see results; too many medications; lack of symptoms; worry; depression; and a concern that pharmacy companies may be influencing doctors.
While the cost issue appears on this list, I know from personal experience and what I hear from fellow patients is that the other 7 reasons are equally credible. I know patients who do not like the side effects they have experienced. I would note that sometimes side effects are made worse by the fact that it was not well explained how to take the medication. By this I mean that perhaps the pill bottle, patient insert and/or discussion with the doctor did not clearly set forth how often to take the drug or any requirements (like for example, taking the pill with food). An error in the timing or other instruction may heighten or even create a side effect that might be just mild or even non-existent if the drug were taken properly. So make sure you have a heart-to-heart discussion with your doctor about exact instructions you should follow in taking your medication.
I have personally experienced the reason of discontinuing a drug because I saw no results. I attribute this partly to my failure. My primary care doctor prescribed a lacquer to treat a minor nail fungus. I should have managed my expectations by asking the doctor when I should start to see a result. But I didn’t and after a few months of not seeing a change, I stopped using the lacquer. At my recent annual physical I said the medication had not worked. The doctor advised me that it can take up to a year to see a result.
I have never suffered from depression, but my anxiety has been evident during the last six years. In fact, some of my visit summaries from doctors note that I have some anxiety. This is not a criticism but is a factual observation they have made. My doctors and I have discussed my anxiety. They realize that I came from a career field where I was responsible for examining an issue from all angles and developing risk assessments and solutions. They know it is hard to turn these skills off. So when I evaluate my own health risks, I can become anxious. My doctors are supportive and compassionate, and endorsed my use of a therapist for the first 4 years of my heart failure journey. So my advice to those who are worried and depressed is: Do not give up on your medications. Instead, seek a therapist or support group to help you deal with any anxiety or depression. Your medications will work better when you are feeling more relaxed and stable.
The reason of too many medications is one that I think we all relate to. Of course any pill you have to remember to take can be one too many – especially if the confusion from your chronic condition makes it harder for you to keep on track with taking an array of pills each day.
It is hard for me to relate to the lack of symptoms reason because I feel the symptoms of heart failure on a regular basis. In my case, the symptoms feel less pronounced when I take the medicines as prescribed, and is the best reason I have for continuing to refill and take my medication.
I’m not sure how one proves to patients that a drug is really treating something that is not yet being experienced by the patients. I think that if you have a good relationship with your doctor you are more inclined to follow advice even when you can’t see proof that you have a particular condition. With respect to the reason that some patients avoid a drug because they are afraid the doctors are being influenced by drug company efforts, well this is another one where it helps to have a doctor you trust. All I can say is that if you think your doctor is misleading you about your condition, or influenced by a drug supplier, well maybe it is time to get a new doctor who you trust with your life – because really, he or she may be the force that is keeping you on this earth.
I came across an article in the health section of the Washington Post dated May 12, 2019. It was entitled: For patients, a caregiver’s compassion is essential. The article talked about how the compassionate attitude of health care providers can impact the patient’s inclination to take medications:
This demonstrates to me that when your health care provider shows compassion for you, it also makes you trust their advice. So this means you may be more inclined to follow that advice, to include taking the drugs they prescribe.
But even though compassion is critical, it still cannot resolve an issue which we probably all have experienced – not having, or falling out of a routine, that prods us to take the pills. So for example, when you have chronic illnesses such as heart failure, you may just be more forgetful when it comes to refilling, organizing and taking medications. With respect to forgetting to refill and organize your medications, there are apparently some services like that will take care of these duties.
For me, I like the routine of setting up my pill boxes a week in advance. It may cause me to think about the drugs at the time, and review the patient pamphlets to refresh my recollection on the best way to take each pill (like with food, or with other medications, etc.) and the side effects. So I have never used this type of service nor do I know how much it costs. But the material I see about these services say that you only have to pay your co-pay. So if you have good insurance and an inability to remember to reorder and set up your pill box, then a service like this might be something to explore - but make sure you nail down the cost issues before you take advantage of the service.
But even if you use one of these services, what is it that will remind a patient to take the drugs that have been packaged and sent to you. For some people, putting it in a place that they will see at the time they take the pills is a good strategy. But what if that doesn’t work for you – or what if you travel a lot and get out of whatever routine you put in place? For me, travel always disrupts my pill taking routine. I’m pretty good at remembering to take the pills when I first get up in the morning. But I take the next dose at dinner. I’m not in my own kitchen where I usually see my pill box sitting there.
When I was on my cruise in April, my family and friends would usually check at dinner to make sure I had remembered to take my pills. So one fail safe is to make sure that you have a person to act as a check and balance. A friend on the cruise also had a reminder alarm that her granddaughter had set up on the phone. When the alarm went off, it showed a little pill icon thus reminding her that it was time to take her medication. Setting up an alarm like this may be helpful to many of us.
Let me end with the fact that according to the New York Times article, in 2017 we spent $425 billion a year on prescription medicine. This means that not taking prescribed medications can waste a lot of money. But beyond the pocketbook impact, is the fact that my Entresto and other meds will not even have a fighting chance to work for my heart if the medication sits in the pill bottle day after day and passes its expiration date. Most important, if I don’t treat my heart, I am also liable to pass my expiration date.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.