Marc Silver

The medical community increasingly recognizes that many patients aren’t perfect pill-takers. And the solution may be as simple as improving communication. “When I formulate the treatment plan, I really involve the patient,” says Lidia Schapira, an oncologist at Massachusetts General Hospital in Boston. “I ask the patient to let me know of any reluctance or hesitation or concerns, and we talk about them.”

To make adherence easier, patients may want to discuss questions such as these with their medical team:

Is there anything special to do before the prescription is filled? Are there forms to fill out? Authorizations to request from an insurance provider? Do only specific pharmacies carry the medication? If the medication is ordered online, does it need special handling in the mail? Is cost an issue?

What if the patient has trouble swallowing pills?

Uneasy swallowers might assume they can crush an oral anticancer therapy pill. “It’s never a good idea to crush a pill unless that’s been studied,” says Donna Berry, a nurse scientist at the Dana-Farber Cancer Institute in Boston. The patient might inhale dust from chemotherapy agents or damage the time-release mechanism.

If the obstacle is the pill’s size, the doctor might be able to reformulate the prescription so several small pills equal one big one. Techniques that kids use for pills come in handy. “You’re going to laugh at this,” Berry says, “but put the pill in pudding or ice cream, so it slides down easy.”

Some patients may not have realized how difficult it would be to swallow the pill. At Dana-Farber, a nurse calls a patient 72 hours after the regimen begins to determine, among other things, whether the pill is easy to take—and if not, if there might be other options.

How can patients remember to take the pill?

The idea of a daily chemotherapy pill “has to be something that sticks in your head,” says medical researcher Joyce Cramer, formerly of Yale University. “And only you can put [that idea] there.” Patients should tell themselves that every day, for the next 30 or 60 or 90 days, or perhaps the indefinite future if they have metastatic disease, they must take a pill. In studies, Cramer has found the power of a mental bookmark really works, creating “a lingering feeling that you’re supposed to be doing something.” Then they need to connect that thought to their daily habits.

I have made it part of my nighttime regimen: Wash your face, brush your teeth, take your pill. I picked a time when I knew I wouldn’t forget it, and it’s worked for me.

The doctor or pharmacist should state how and when the pill should be taken, says Frank Federico, a registered pharmacist and executive director at the nonprofit Institute for Healthcare Improvement in Cambridge, Mass. Then the patient should be asked to explain his or her personal plan: “I’ll take the pill every night at 10 p.m., as part of my getting-ready-for-bed routine.” That’s what works for Barbara Errickson, 64, of Brigantine, N.J., who takes a daily dose of Tarceva (erlotinib) for stage 4 lung cancer. “I have made it part of my nighttime regimen: Wash your face, brush your teeth, take your pill. I picked a time when I knew I wouldn’t forget it, and it’s worked for me.”

What if patients are still afraid they’ll forget?

Then they’ll need to set up reminders. Philippe Johnson, 33, was prescribed etoposide to fight his stage 2b testicular cancer in 2007. The meds had to be refrigerated, thus, the South Carolina resident kept the pill container in the fridge’s butter drawer, so it stared him in the face every morning when he went for the milk.

Lillian Shockney, a registered nurse and administrative director of the Johns Hopkins Avon Foundation Breast Center in Baltimore—and a two-time breast cancer survivor&mdash;is also a refrigerator advocate. For her own meds, she puts a note on the refrigerator door: “Don’t forget to take your pills.”

But even a refrigerator note may eventually become like wallpaper. For patients who need a daily jolt, calendars and electronic reminders are an option.

That’s a question patients should ask when they get the prescription.

“Find out upfront whether you should try to make it up,” Berry says. The answer may be that a double dose is too much. “But that’s something that needs to be individualized per patient.”

Doctors should tell patients what to expect—and patients should tell their doctor what they experience (keeping a log helps), so management strategies can be found. Otherwise, side effects might make patients want to stop taking the pill.

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To improve adherence, patients with cancer must recognize barriers.

Overcoming Obstacles to Cancer Medication Adherence

Different strategies for different patients—that’s the way it rolls in the world of oral chemotherapy. If patients find electronic or paper reminders helpful, here are some resources to consider.

Paul Cerrato, editor of InformationWeek Healthcare, recommends a pair of apps for pill reminders. Pillboxie (99 cents at iTunes) lets patients program the time of day for an iPhone or iPad reminder. They can select an icon that’s the shape and color of the pill (say, green and round) and type in the dosage. Cerrato also likes RxmindMe, a free app at iTunes. Patients can take a photo of the pill, plug in dosages, the doctor’s name and other prescription information. See rxmind.me for a rundown of features.

 An online calendar linked to an email account or able to text cellphones can send patients pop-up messages and/or email reminders. All patients have to do is enter information about the pill at the scheduled time of day when they’ll take it. When using electronic reminder systems, however, patients should be aware of a condition that the medical community calls “alert fatigue.” If patients are receiving 10 or 15 daily reminders popping up on their cellphones or computers, they may end up ignoring them.

Patients don’t have to buy a special calendar for pill reminders—a regular workhorse calendar hanging in the kitchen will do just fine. Patients can also check with the pharmacy or doctor’s office&mdash;they may have a calendar tailored for pill-taking with space for recording side effects. The Dana-Farber Cancer Institute offers downloadable pill diaries for once-a-day, twice-a-day, or multiple oral chemotherapies. Patients fill in the time they take the pill and the dosage, and there’s a box where they can track side effects as well. See: 

dana-farber.org/Health-Library/Oral-Chemotherapy-Drug-Diary.aspx

Different strategies for medication compliance are needed for different patients.

Need a Reminder to Take Your Medicine?

Many patients are overwhelmed when facing a cancer diagnosis. The second shock may be from the sticker price of treatment.

Even patients with insurance may be underinsured or face high out-of-pocket costs, especially if they need an oral medication as opposed to one delivered intravenously.

“Many patients are having trouble paying for their oral drugs,” says Erin Moaratty, chief of mission delivery at the Patient Advocate Foundation. A healthcare plan could require a co-pay for oral chemotherapy and also may have a cap on annual benefits. A copay of 20 percent can result in an astronomical sum: $1,800 out of pocket for a $9,000-a-month pill.

Some states require health insurers to cover oral chemotherapy at the same reimbursement rate as intravenously administered treatment, but not every state has such a law. Unfortunately, the Patient Protection and Affordable Care Act does not address this issue, Moaratty says.

Anthony Lacey, a Maryland real estate agent, was barely able to cover the monthly $7,000 tab for his wife’s nine months of oral chemotherapy before she died of metastatic breast cancer in 2011. Because doctors could not find a similarly effective IV option, he exhausted his daughters’ college fund and now must sell his home. As devastating as the experience was, Lacey was committed to helping others in the same boat. He helped push for a new law in his home state of Maryland that resulted in oral chemotherapy being covered to the same extent as intravenous drugs. At least he has the knowledge that his fellow Marylanders will not face the dilemma that he did.

Medicare patients can also get caught in the “doughnut hole”—they have spent $2,800 on prescription drugs that are covered by Medicare&mdash;but it won’t kick in again until $4,550. Until then, the financial burden is theirs.

A patient may decide that the only solution is to cut back on doses. Doctors would prefer a frank conversation about payment problems as they can explain that reduced doses may limit or negate the effect of therapy. In addition, physicians may have resources they can offer to help patients pay for their treatments. Pharmaceutical companies often have patient assistance programs for those who meet certain criteria, such as a fixed income and few resources. Doctors, nurses or a patient navigator or social worker on staff can help steer patients to the right drug company contact, as can patient-oriented organizations, such as the 

Financial aid may also be available from the 

 or a cancer group that supports patients who have a specific cancer type.

Physicians might also have treatment alternatives that are less expensive. “If there’s no way to procure the medication without the patient purchasing it, it’s up to me to make a substitution,” says Lidia Schapira, an oncologist at Massachusetts General Hospital in Boston. “Most of the time I can find a drug that is cheaper, and I do so.”

There are several organizations, companies and institutions that offer financial help to patients for treatment costs. Visit 

Helping patients pay for their cancer mediation can improve compliance.

What if the Medication is Too Expensive?

Many patients are overwhelmed when facing a diagnosis of cancer. The second shock may be from the sticker price of treatment.

“Many patients are having trouble paying for their oral drugs,” says Erin Moaratty, chief of mission delivery at the 

. A health care plan could require a co-pay for oral chemotherapy. A co-pay of 20 percent can result in an astronomical sum: $1,800 out of pocket for a $9,000-a-month pill.

Some states require health insurers to cover oral drugs at the same reimbursement rate as intravenous chemotherapy, but not every state has such a law. Unfortunately, the Patient Protection and Affordable Care Act, aka ObamaCare, does not address this issue, Moaratty says.

Anthony Lacey, a Maryland real estate agent, was barely able to cover the monthly $7,000 tab for his wife’s nine months of oral chemotherapy before she ultimately died of metastatic breast cancer in 2011. Because doctors could not find a similarly effective IV option, he exhausted his daughters’ college fund and now must sell his home.

As devastating as the experience was, Lacey was committed to helping others in the same boat. He helped push for a new law in his home state of Maryland that resulted in that oral chemotherapy being covered to the same extent as intravenous drugs. At least he has the knowledge that his fellow Marylanders will not face the awful dilemma that he did.

Medicare patients can also get caught in the “doughnut hole”—they have spent $2,800 on prescription drugs that are covered by Medicare–but it won’t pick up again until $4,550. Until then the financial burden is theirs.

A patient may decide that the only solution is to cut back on doses. Doctors would prefer a frank conversation about payment problems as they can explain that reduced doses may limit or negate the effect of therapy. In addition, physicians may have resources they can offer to help patients pay for their treatments. Pharmaceutical companies often have patient assistance programs for those who meet certain criteria, such as a fixed income and few resources. Your doctor, nurse, or a hospital navigator or social worker on staff, can help steer you to the right drug company contact, as can patient-oriented organizations such as the 

. Financial aid may also be available from the A

 or a cancer group that supports patients with a specific cancer type.

Your physician may also have treatment alternatives that may be less expensive. “If there’s no way to procure the medication without the patient purchasing it, it’s up to me to make a substitution,” says oncologist Lidia Schapira, MD, an oncologist at Massachusetts General Hospital in Boston. “Most of the time I can find a drug that is cheaper, and I do so.”

There are several organizations, companies and institutions that offer financial help to patients for treatment costs. You can find many resources in our 

 (under Special Interest/Financial and Drug Assistance) and “

 understands that costs of therapy may impact a patient's adherence to medication. A special supplement from 

 which will look at barriers and improvements to adherence will be available in Spring 2013. 

Cost of cancer care is a growing concern of both patients and medical professionals.

Marc Silver

Overcoming Obstacles to Cancer Medication Adherence

Need a Reminder to Take Your Medicine?

What if the Medication is Too Expensive?

Help Wanted: What if I Can't Pay for My Cancer Care?

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