Dr. C. Everett Koop, the US Surgeon General under President Ronald Reagan, once famously scolded, “Drugs don't work in patients who don't take them.” If that makes you feel a little sheepish because you don't always take your pills, you have company. As many as 30 percent of patients do not fill their prescriptions, according to a 2010 survey of more than 75,000 patients whose prescribed drugs were covered by health insurance. The survey, which was published in the Journal of General Internal Medicine, also revealed that new prescriptions for chronic conditions such as high blood pressure and high cholesterol, both of which can lead to strokes, were not filled more than 20 percent of the time. In another study of more than 400 patients aged 65 and older taking medication for high blood pressure, published in 2016 in the Journal of Patient Preference and Adherence, 27 percent of participants unintentionally did not take their medicine as directed because of cognitive and other problems, and 28 percent intentionally did not.
Missing a pill here or there or not filling a prescription may not seem serious, but it actually causes 30 to 50 percent of chronic disease treatment failures and 125,000 deaths each year, according to data from the US Centers for Disease Control and Prevention (CDC). The CDC's data also reveal that 25 to 50 percent of patients being treated with statins—cholesterol-lowering medications that are often part of treatment for preventing a stroke—who stop their therapy within one year have up to a one in four increased risk for dying.
For people with neurologic conditions, not taking drugs as prescribed means missing out on effective treatment, including recently approved medications for epilepsy, stroke prevention, and multiple sclerosis, according to a study by investigators at Harvard Medical School published in the November 17, 2016, issue of Clinico-economics and Outcomes Research.
DOCTORS ARE CONCERNED
Medication compliance is the first topic Joseph Sirven, MD, FAAN, professor of neurology and chair of the department of neurology at the Mayo Clinic in Phoenix, AZ, brings up when patients come in for office visits, he says. Indeed, a 2011 survey of more than 600 primary care doctors published in Consumer Reports found that the patients not taking their medicine was the doctors' chief concern.
HELPING PATIENTS COMPLY
There are many reasons why patients don't take their drugs, from affordability to forgetfulness, but strategic thinking between physicians and patients and their families and caregivers can help overcome these common obstacles.
1. Discuss costs with your doctor. Even patients with robust insurance may incur steep copays, especially if the drug is new or not on their insurers' covered drug list. “If patients get to the pharmacy and find they can't afford their share, I don't want them to wait for the next visit; I want them to call right away so we can see what other options we have,” says Dr. Sirven. Some insurers require doctors to ask for authorization before prescribing a drug, especially an expensive one. If your pharmacy requires authorization, ask if the pharmacist can work with your doctor to speed up the process. Insurers may also require doctors to use step therapy—prescribing another, less expensive drug—before approving a higher-priced drug. If your doctor sees no harm in step therapy, it might result in a lower copay.
2. Understand drug tier systems. Both Medicare and many private insurance prescription drug plans follow a tier system that ranges from least to most expensive. Tier 1 consists of generic drugs with a minimal copayment, often just $5. Tier 2 comprises brand-name drugs for which generics don't yet exist and which have been around for a while. They require a slightly higher copay than generics. Tier 3 is for nonpreferred brand name drugs with higher copays than either tier 1 or tier 2 drugs. Tier 4 is reserved for specialty drugs—often recently approved drugs or ones that require special administration, such as an injection. Rather than a copay, you may have to pay a percentage of the drug cost, which can be thousands of dollars per year. Your insurance plan should include an online link or paper copy of your insurer's list of approved drugs, called the formulary, which lists the drugs by tier and the copay amount or percentage you can expect to pay. Once you are familiar with the formulary, you and your doctor can work to find the most effective—and affordable—drug.
3. Comparison shop. If you pay for some drugs out of pocket because, for example, your Medicare drug plan does not cover all the medications you need to take, look for the pharmacy that gives you the best deal. An app such as GoodRx can check retail costs at pharmacies in your area.
4. Check the big box stores. Chains such as Walmart and Costco and even Walgreens often offer low-cost generic medication for $4, a fee that is often less than a copay.
5. Consider insurance appeals. While an insurer may not uniformly cover certain drugs, doctors can appeal decisions by insurers not to pay. The insurer won't always agree, so be prepared to work with your doctor's office and fill out a lot of paper-work, says Dr. Sirven. Your doctor will have to request an exception from your insurance company by stating that he or she feels that a different drug will not be as effective or could pose a danger because of potential side effects or because it might interact with other drugs you're taking. If the exception is not approved, you can appeal by writing your own letter to the insurance firm—but ask your doctor for guidance on what medication to take while the appeal is pending. https://Healthcare.gov has information on filing appeals when insurance denies a claim. Call the customer service number of your insurance company for more information.
6. Investigate payment assistance programs. Payment assistance programs help pay some or all of the cost of the drug if you don't have insurance, or if your insurance doesn't cover the drugs your doctor prescribes. The amount can range from a small discount to full coverage, but you'll need to apply for the options. If you're on Medicare and can't afford medicine, visit http://medicareinteractive.org/about, a website from the Medicare Rights Center that provides information about assistance programs, many of which apply to people not on Medicare, as well. Otherwise, ask the staff at your doctor's office, friends in a support group, or the social work office of local hospitals. You can also check a drug company's website under “patient information.” Patient organizations may also be able to help. The Epilepsy Foundation, for example, maintains its own list of payment assistance programs at http://bit.ly/EF-PatientAssistance.
7. Ask about drug options. Periodically review your drug list with your doctor or pharmacist to see if any drugs you take are now available as a generic, or whether there is a generic alternative medication that may work, especially if you pay out of pocket for your drugs.
8. Ask about splitting pills in half. Some medications cost about the same per pill, regardless of the dose. So if your doctor prescribes 20 mg of a statin, you could get a month's supply of 40 mg pills, then split each tablet in half and have a two-month's supply for the cost of one, for example. This strategy could save money for people paying for drugs out of pocket, but talk to your doctor first, says Michael Cohen, director of the Institute for Safe Medication Practices, in Horsham, PA, since the physician will need to prescribe the dose. Not all drug types can be split, such as capsules, and certain medications, such as the blood thinner warfarin, should not be split since too little could cause blood clots and too much could lead to serious bleeding. If your doctor approves it, ask the pharmacist to suggest pill cutters to make sure you cut the pill exactly in half and get the same dose each time.
9. Order drugs by mail. Buying drugs via mail order can save money, as long as you protect yourself from disreputable companies that might be selling counterfeit drugs. To do that, follow these tips from the US Food and Drug Administration (FDA): be sure the company is located in the United States and is licensed by the state board of pharmacy where the website operates, has a licensed pharmacist available to answer questions, and requires a prescription before dispensing drugs. For other tips, visit http://bit.ly/FDA-MailOrderTips.
10. Determine Medicaid eligibility. More than 20 states have expanded Medicaid eligibility to single adults with low incomes. Check https://healthcare.gov to see if your state has a Medicaid program you can apply for.
11. Find a community health clinic. Anyone, including undocumented immigrants, is eligible for care, for free or on a sliding scale based on income, at community health clinics, which often dispense drugs at no or low cost. Find a clinic in your neighborhood at http://bit.ly/FindHealthCenter.
1. Tell your doctor. Some people have a hard time accepting they have a chronic condition that requires daily medication. For example, people who have high cholesterol or high blood pressure but are otherwise healthy may have a harder time adjusting to taking a daily pill, says David Spencer, MD, FAAN, professor of neurology and director of the Comprehensive Epilepsy Center at Oregon Health & Science University in Portland. He urges patients to talk to their doctor rather than fill a prescription and toss it away later.
2. Discuss alternatives to pills. If losing weight or exercising is a substitute for medication, talk to your doctor about a diet and exercise program. If meditation or exercise helps with migraine pain, explore those options with your neurologist. Whatever you do, don't forego taking your medication without first speaking with your physician.
3. Join a support group. Members of a support group may be able to offer advice on working through denial.
OBSTACLE: SIDE EFFECTS
1. Share your fears. “We want to hear our patients' fears about potential side effects, as well as those they actually experience, since either can keep them from taking a drug,” says Dr. Spencer. To manage side effects, doctors may be able to reduce doses or adjust the timing of dosing, so the drug can be taken at bedtime if it causes fatigue, for example. Or the doctor may prescribe an alternative drug.
2. Weigh risks versus benefits. All drugs come with some risk, but if the benefits outweigh the risks or the risks can be managed, taking the drug makes sense, says Dr. Sirven. Some epilepsy drugs, for example, can cause bone loss, he says, but that risk may be worth it if the medication controls your seizures. You can lower your risk further, Dr. Sirven says, by talking to your doctor about drugs that can help maintain bone density, as well as exercise and diet adjustments that can help retain bone strength.
3. Talk strategies. You and your doctor can brainstorm on how to reduce side effects. For example, to lessen stomach upset you might be able to take the drug right before a meal. To alleviate muscle pain while on a statin, your doctor may lower the dose or switch to an alternative drug, says Osama Zaidat, MD, FAAN, director of the neuro-science and stroke program at the St. Vincent Mercy Medical Center in Toledo, OH.
1. Talk about expectations. People who have a poor understanding of their disease or of how drugs work are less likely to take them, says Dr. Spencer. With most neuro-logic conditions, he explains, one pill won't fix the underlying problem. He encourages patients to ask their doctors how soon a drug might be effective. With migraines, for example, drugs to relieve pain can take effect in just hours, but drugs to prevent migraines could take days or weeks to become effective, says Teshamae Monteith, MD, FAHS, assistant professor and director of the headache program at the University of Miami Miller School of Medicine. With seizures, on the other hand, you tend to find out pretty soon whether a drug or dose is effective, says Dr. Sirven. If it isn't, your doctor needs to prescribe a different dose or drug.
2. Be vigilant. Write down what you expect in terms of the drug's effectiveness, says Chelsea Kidwell, MD, FAAN, professor of neurology at the University of Arizona School of Medicine in Tucson. Then check in with your doctor if the drug doesn't meet those expectations.
1. Enlist a caregiver. If forgetting to take medications is a sign of cognitive problems, patients may need to have their drugs administered by a caregiver or family member, who can also keep them out of reach so patients don't inadvertently take extra doses, says Jeffrey Kaye, MD, FAAN, director of the Layton Aging and Alzheimer's Disease Center at Oregon Health & Science University. The Alzheimer's Association hotline (800-272-3900) has additional tips for making sure people with dementia take their medication.
2. Write down instructions. When the doctor or pharmacist first tells you how to take a new drug—with water or an hour before meals, for example—write the instructions down and keep them in a handy place.
3. Use reminders. Download an app that can alert you when it's time to take a pill, or get a pill box with sections for each day of the week.
1. Use mail order. Ordering drugs through the mail is convenient because it saves a trip to the pharmacy. Just be sure to cancel the order if your doctor stops prescribing the drug.
2. Investigate pharmacies. Check to see if there's a pharmacy in the same building as your doctor's office to cut down on extra trips, but talk to your prescription plan first to be sure prices aren't higher. Inquire if any pharmacies in your area offer delivery services.
3. Enlist help. Ask a family member or trusted caregiver to pick up your prescription, after checking with the pharmacy about what information they need, such as birth date. If you're taking opioid pain relievers ask if those can be picked up by someone else and what specific information is required to do that.
4. Look for free transportation. Patient organizations and senior resource centers may be able to direct you to free and low-cost transportation for doctor's appointments and trips to the pharmacy.
5. Discuss with others. This is a great topic to bring up in a support group, says Dr. Sirven, because others in the group have likely dealt with the same problem and may have helpful suggestions.
OBSTACLE: MULTIPLE DRUGS
1. Take fewer drugs. Lots of people with neurologic conditions take more than one medication. That can add to the burden of taking drugs, especially if directions for some— take on a full stomach, for example—are different from others—take with a full glass of water but no food. And focusing on one drug may interfere with remembering to take others. Talk to your primary care doctor and neurologist about possibly taking fewer drugs, says Dr. Kidwell—but never stop taking any on your own.
2. Keep a list. Maintain two lists—one for your home, one for your wallet—of all the drugs you take.
3. Retain prescription containers. Keep the pharmacy bottles your medicines come in. The instructions on the labels remind you how to take the drugs and list the expiration date and contact information for the pharmacy.
4. Make a schedule. List the time you take the drug, its name, and the amount you should take. You can use the list to review your regimen with your doctor and to give to a caregiver or family member if you're not feeling well and need help remembering what to take and when.
5. Consider a pill organizer. Look for one that lets you dole out a week's worth of pills by day. If you take medicines at different times, look for an organizer that has dividers for morning, afternoon, and evening. But keep the vials the medicines came in so you can doublecheck instructions.
Common Drug Questions Answered
We asked Chelsea Kidwell, MD, FAAN, professor of neurology at the University of Arizona School of Medicine in Tucson, to answer five of the most common questions about medications.
Are generics the same as brand drugs? Yes. But it's best to check with your pharmacist or physician to see if he or she has any concerns about a particular drug you're taking. There have been anecdotal reports of problems with generic epilepsy drugs, for example, but recent scientific studies have been reassuring.
Can I stop my medication for a day on my own? No. You should always discuss medication changes with your physician. Stopping suddenly could cause a reaction. Or a symptom that had been under control, such as seizures, could resume.
What do I do if I forget to take my medication? Check with your doctor's office to see if you should take the missed dose or wait for the next scheduled time. At your next doctor's visit, discuss what to do when you miss a dose. Write down the information for each drug, and keep it handy should this happen.
Given all the potential side effects of medications, is it safer not to take the drug? No. Doctors prescribe medications to prevent long-term damage from chronic diseases such as hypertension or to manage symptoms of conditions such as Parkinson's disease, epilepsy, or multiple sclerosis. If you are experiencing side effects, discuss them with your doctor.
I feel fine, so why do I have to take my medications? Some conditions, such as high blood pressure, may not cause acute symptoms but can lead to long-term damage if not controlled. For other diseases, medication may reduce or eliminate symptoms—unless you stop taking the medication, in which case the symptoms could return and cause damage, or even death in some cases.
Set an alarm on a clock or your watch or put your pill container near your toothbrush or the coffee maker. Pick up a plastic pill box from your local pharmacy and fill it at the start of each week with the drugs you need to take and keep it in a cool, dry place. These are simple ways to remember to take your daily medication.
If these reminders aren't enough and you're still forgetting to take your pills, technology might be able to help. But talk to your doctor, pharmacist, or support group, or call the help line of a patient organization before you buy any device or smartphone app. The Parkinson's Disease Foundation, for example, has counselors who can walk you through different devices. In the meantime, keep these points and possibilities in mind.
Mind the Costs Many medication reminder apps are available for little or no cost. Insurance may not pay for more expensive options, such as devices that dispense each drug on time and even connect with the pharmacy for refills, but you may be eligible for reimbursement if you have a pre-tax flexible spending account through your employer.
Line Up Support Many reminder devices require some programming and an internet connection. Call the toll-free number of the manufacturer to ask what is required to operate the device, so you don't miss a dose or two setting it up.
Convenience Packs In the last year or so, CVS and other pharmacies have launched compliance packaging. Usually free of charge, the pharmacy will package your medication as daily doses in individual envelopes or in blister packs with labels for the day and time you need to break the plastic and take the pill. An even simpler option is PillPack, an online pharmacy that packages daily meds in individual envelopes and sends them every two weeks by mail. If your insurance covers the medication they stock, you'll pay the standard copay but no extra charge for the packaging.
Caps that Help Several companies make specialized drug vial caps that can help you remember if you took your medicine. The simplest ones show how much time has elapsed since you last opened the bottle. CVS and Rite Aid sell them for about $10 for a pack of four. Remember to take the cap off the vial and put it on the next refill before throwing away the empty bottle.
Apps for Smartphones A group of researchers compiled a list of the 10 best medication reminder apps based on how easy they were to use. The list was first published in 2013 and updated in 2016. Top-ranked apps include Medisafe, a free app that buzzes when it's time to take a dose and alerts a doctor and, if requested by the patient, a “medifriend,” when a dose was missed. Users must input information about each prescription. For information about other apps, go to http://medappfinder.com.
Smartwatches A growing number of smartwatches offer medication reminder apps you can download and sync with your phone so no matter which device you're using, you'll still get an alert.
Home Robots Several companies have introduced home robots designed to dispense pills. Some cost as much as $500. That may be worth the price for someone with epilepsy, for example, where precise medication management is crucial. Once programmed, the devices can dispense the right dose at the right time, order refills, and connect with the doctor's electronic health record system to document your medication history.