Why am I INVEsting my faith and confidence in the Entresto Central Support Program?

I have mentioned the drug Entresto in a number of posts – everything from describing the commercials that broadcast the existence and success of this new heart failure drug to posts describing my experience on the drug, to include an increase in potassium levels.  It is partly the success of the drug that has made me commit to managing the dietary changes to control the potassium issues (with  maybe just a minimal amount of grumbling).  But it is also this wonderful support program that the drug company Novartis has established to help heart failure patients who are on Entresto.

​So what is Entresto?  According to the Novartis promotional materials, “ENTRESTO is for people with a certain type of chronic heart failure where the heart is enlarged and too weak to pump the way it should. ENTRESTO is the first and only FDA-approved medicine of its kind that can help improve your heart's ability to pump blood to the body. Individual results may vary.”  I have an enlarged heart, and for years my echocardiograms have established that my heart is not pumping effectively and the ejection fraction is very low.  So Entresto seems tailor made for me.  

Unfortunately, even when a medication seems to be designed just for you, there are side effects that might make it impossible for a person to use.  In the case of Entresto, it is not appropriate for those who are allergic to valsartan or sacubitril (the ingredients in Entresto); those who have angioedema; those who are taking ACE inhibitors; those or who have diabetes and take aliskiren.  Additionally, side effects that need to be monitored are an increase in potassium (roger that), low blood pressure (roger that), dizziness or lightheadedness, and angioedema.

​When the doctor and I decided that I should try Entresto, his office gave me a package of Entresto materials that included a coupon for a free month’s supply of Entresto as well as a coupon to pay part of my co-pay.  When I called to activate the coupons, I was asked if I wanted to enroll in the Entresto central support program.  The intent of the program is to support heart failure patients and to provide them with useful information.  Based on my experience in the last two months, I would say that the program is a blessing.

Of course the first benefit is economic, providing patients with help paying for the prescriptions.  But what use is a drug if you forget to take it.  If the bottle just sits in your medicine cabinet because you cannot remember to take out the requisite dose each day, then it is just money and coupons wasted.  So one of the first things that the program sends you is a health tracker booklet that includes a section called the “medicine tracker”.  It allows you to track not only your Entresto usage but other drugs as well.  I have to admit that I don’t use this because I have a pill container I set up each week that helps me remember to take my drugs faithfully throughout the week.  But if I did not use that method, then I think the medicine tracker would be quite useful. 

The same health tracker includes a section where patients can track their weight and symptoms each day.  Tracking weight is critical, because a rapid gain of say 2 or 3 pounds in one day signals that the patient is probably retaining fluid which will cause additional stress on the heart.  I have a chart on my regfrigerator that I have always used to track my daily weight.  But if not, I’d be using the chart that is provided by the support program.  The same chart allows the patient to makes notes and rate any symptoms such as shortness of breath, fatigue, etc.  This is helpful for when you go to see your doctor.  He or she needs to know which symptoms have worsened because this may also be a sign that your heart has been adversely impacted.

Keeping track of so many symptoms, drugs and side effects of new medication can sometimes seem overwhelming. Sometimes you just wonder if it is all worth it.  This is probably why the Entresto folks have representatives who call you every week or so to check up on you and see how you are doing on the drug and just in general.  I have received phone calls a number of times since I started taking Entresto and I found the representatives to be very upbeat and supportive.  Sometimes you just need those little extra nudges that can motivate you.  Plus you can ask them questions about Entresto to get clarification about usage, symptoms, etc.  Finally, they suggest that you listen to information regarding the drug.  The upside to this is that I learned how to pronounce the two main ingredients – valsartan and sacubitril, which can be real tongue twisters!

I also have received a number of hard copy materials in the U.S. Postal mail and by e-mail that contain a lot of helpful hints about how to deal with your heart failure.   I consider myself pretty knowledgeable about the condition but here are a few that were either new to me or that I think are worth repeating to those of you who either have the condition or know someone who has it.

• “Hearing the word “failure” can be scary, but the best way to deal with a chronic condition is to learn all you can and make small changes each day.”  I love this advice.  As we all know, I hate the word term heart “failure” because as I said many times, if my heart failed I would be dead.  And let’s face it – that is a scary thought.  But you  need to just be persistent, but also realize that persistence can be accomplished in baby steps.  This is why the small changes each day part of the statement is such awesome Entresto support advice about how to manage your heart failure.
• “It is not always easy for people with heart failure to talk about their symptoms.  Sometimes the symptoms are hard to describe…but sharing how they feel might save them a trip to the emergency room.”  This really hits home.  Sometimes I am afraid that the doctor’s and nurses must think I’m losing my mind.  Like the times I tried to describe how the beta blocker I was on was making me really anxious, and that I thought this was because the necessary action in blocking adrenaline was scary for someone who had been an adrenaline junky for years.  I don’t feel so bad now.  It’s sometimes hard to describe if you haven’t lived the patient’s life pre and post heart failure.  But at the end of the day maybe the  medical team just needs to know that I’m having anxiety regardless of the reason and just work from there.
• ​On limiting liquids…”Instead of reaching for a drink they can try chewing sugar free gum instead.”  I love this advice and I do chew sugar free gum, which will warm the heart of my dentist.  But it will not warm the heart of a family member who was at one time a school teacher with students who constantly chewed and popped gum.   
• Or here is one for friends of heart failure patients who like to go out with you but may not get why you are limiting or even avoiding alcohol:  “It’s also important for people with heart failure to limit the amount of alcohol they drink.  In addition to being a liquid, too much alcohol may increase their heart rate and make their heart failure worse.”  So to get around the serious ramifications, I make light of it.  When the waiter is getting drink orders, I usually say something like:  “I’m the designated walker”, or I’m the designated wet blanket! 

A lot of us who have heart failure came from very independent backgrounds, where we may have had jobs where we were charged with a lot of responsibilities and decision making.  So you might imagine that it is hard for us to cede control to others to help us manage this new challenge.  But if you don’t cede control to others you may find yourself ceding control to this chronic condition.  So the Entresto support materials make it easier for us by saying:  “People with heart failure usually find that things get easier once they ask for help, make decisions together, and take on their condition as a team.”  As much as I like to be in control, I always got high marks in the work place for being a team player.  So really, it fits that portion of my profile.

In fact, this advice of asking for help also dovetails nicely with another piece of advice:  “Your heart doesn’t only belong to you.”  At first when I saw this, I was a bit shocked.   Like – really, does someone have a lien on my heart that I don’t know about?  What I think this refers to is a point that is made very well in the Entresto commercials.  We live in families and communities, and our interaction with others is vital.  Our heart pumps vitality in those families and communities just like it pumps blood through us.

The Entresto support program also sent me an envelope containing some very interesting recipes.  As the cover letter says, a healthier heart starts with cooking smart.  I am not much of a cook, but I think even I could tackle these recipes because they are quick and easy.  Most important, the recipes are all low salt which is important as most heart failure patients are on a salt restricted diet of less than 2000 milligrams of sodium a day, and sometimes even as low as 1500 milligrams a day.

There are a few suggestions that I plan to convey to the Entresto representatives next time I receive a check-in phone call.  I think the recipes are a wonderful idea.  However, as I well know, one of the side effects of Entresto is an increase in potassium.  If that happens, your doctor may want you to restrict potassium.  Thus, it is important to know the amount of potassium in each recipe.  While sodium was listed on each recipe card, I think it would be an excellent idea to add the potassium amount on future recipes.

Sometimes when the Entresto representative calls, I am not available to take the call.  I always try to return the call, but often the wait time can be 20 minutes or more.  While the support program gives you the option to leave a call back number and time, why can’t we leverage e-mail?  In other words, can there be a central address that I can e-mail to say, hey I received a voice mail from one of your representatives and here is a report on how I’m doing.  Or , here are some questions I have if someone can get back to me?   I just think it would get information to and from the program in a fast and equally efficient manner.

​The bottom line is that I am thrilled to be taking a new drug that has so much potential and has already produced stellar results in some patients.  Imagine my surprise and delight to know that there is a program that also cares about me as a patient and wants to increase my chance to have success with Entresto.  Put me down as a forever fan!