Mark Cantrell

DURING HIS CAREER DOING humanitarian work in the Middle East and central Asia, Len Rodgers has been no stranger to adversity. In 1967, he and his family were evacuated from Lebanon during the Six-Day War. “I’ve seen just about every Middle East war since,” Rodgers says. But in 2003, he faced his biggest battle yet.

While in Kyrgyzstan, Rodgers began to feel weak and lethargic, and when he returned to the United States, he sought help at Mayo Clinic’s campus near his home in Arizona. The diagnosis: multiple myeloma. His doctors asked him to consider entering a series of clinical trials, and he agreed.

The doctors harvested stem cells from his bone marrow, then administered a regimen of chemotherapy to kill the cancer cells in his bones. His own stem cells were then reintroduced in a procedure known as an autologous transplant. To keep the cancer from returning, Rodgers received five investigative oral chemotherapies. They were all effective.

There was no charge for the trial medication, but once Rodgers was prescribed drugs approved by the Food and Drug Administration, the sticker shock was intense. “The Pomalyst (pomalidomide) I was put on costs $13,000 a month,” he says. “A few calculations told me that, even with Medicare, the outof- pocket expenses would have bankrupted my wife and me.”

Fortunately, a clinic nurse directed him to Good Days, known at the time as the Chronic Disease Fund. After evaluation, he was accepted into an assistance program.

“I find it hard to put into words how grateful I am for their help,” says Rodgers, who turned 80 in November. “A lot of people my age are long retired. But I love the work I do, and I know how much it’s needed. Thanks to Good Days, I can continue to do it.”

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During his career doing humanitarian work in the Middle East and central Asia, Len Rodgers has been no stranger to adversity. In 1967, he and his family were evacuated from Lebanon during the Six-Day War. “I’ve seen just about every Middle East war since,” Rodgers says. But in 2003, he faced his biggest battle yet.

From War to an Even Bigger Battle

For most people in their 20s, life stretches out before them like an endless highway, full of possibilities. Andrew Ladd and Fumiko Chino were no different, busy planning a life together as he worked toward a doctorate in robotics at Rice University and she pursued a career as an art director. But when Ladd fell ill in 2005 and was diagnosed with a particularly aggressive form of neuroendocrine carcinoma, their lives changed in an instant.

In addition to dealing with the stress of a cancer diagnosis, Chino says, the financial aspects of her husband’s illness (the couple married in 2006) soon became an oppressive hardship. “We quickly realized he was horribly underinsured,” she remembers. “We were hit with an enormous burden of out-of-pocket expenses that really crushed our spirits and affected our quality of life.”

As Ladd’s disease progressed, Chino was forced to quit her job to care for him. The couple eventually exhausted their savings and reached the limits of their insurance coverage.

When her husband died in 2007, she was left with a mountain of unpaid bills. “Before this, I had felt I was in charge of my life, and suddenly I was $300,000 in debt,” Chino says. “I had never even been in debt before this happened.”

What the couple experienced now has a name: financial toxicity. The term, coined by Yousuf Zafar, M.D., M.H.S., a cancer researcher at Duke University School of Medicine, refers to the financial harm that often results due to a severe or extended illness. Chino’s personal experience with toxic debt motivated her to return to academia at Duke and become a radiation oncologist. She now works beside Zafar, helping others through their own battles with cancer and its aftereffects.

It’s no mystery why so many patients with cancer experience unprecedented levels of debt, even if they have insurance: The cost of treatment and medications is at an all-time high. According to the 

, 12 of 13 cancer drugs arriving on the market in 2012 cost more than $100,000 per year. For a patient whose share after insurance comes to the typical 20 to 30 percent, the annual bill would be $20,000 to $30,000 — almost half the average American’s yearly income.

The results of a recent study showed that patients with cancer are 2.6 times more likely to go bankrupt than those without cancer.

“Cancer treatments are some of the most expensive in the industry,” Zafar says. “Medical bills are thought to be the most common cause of bankruptcy in the United States.

“Taking those factors into account, patients with cancer are at very high risk of experiencing financial toxicity — potentially higher than with other chronic illnesses. Some patients forgo vacations, spend less on food and, in many cases, deplete their retirement savings to pay for care. That has a tremendous impact on their well-being and can compromise their outcomes, as well.”

Stepping in to fill the gap are a number of nonprofit organizations that provide a safety net for patients experiencing financial toxicity. Some offer information directories that point patients to the best sources of help, while others aid in navigating the labyrinthine maze of insurance, copays, networks and other aspects of the complex health care reimbursement system. A few organizations provide direct financial support to cover the costs associated with therapy.

The National Comprehensive Cancer Network maintains a list of patient and caregiver resources in its Virtual Reimbursement Resource Room Guide. Visitors to the site can search by cancer type, drug name or reimbursement program to find corresponding resources. They also can download the entire guide or install a version on a smartphone or tablet. The service is offered at no charge, although access requires registration. Both iOS and Android devices are supported.

The Cancer Financial Assistance Coalition offers a one-stop method of searching for aid from its 14-member alliance. The site’s home page allows searches by diagnosis, zip code and type of service needed. It also offers information on various cancer costs, as well as how to take control of finances and find help within local communities.

More than 20 years ago, Richard Sagall, M.D., was practicing family medicine in Maine when he learned of several patient assistance programs his patients weren’t familiar with. During nights and weekends, he designed a website, needymeds.org, to get the word out. Today, the site offers information on assistance programs from more than 400 companies with programs offering more than 4,000 different drugs and formulations. Website visitors can obtain drug discount cards, coupons and rebates, as well as find local and national financial resources based on diagnosis.

One of the hard truths about financial toxicity is that it can affect even those who have health insurance, as Chino discovered during her husband’s battle with cancer. Copays and other out-of-pocket expenses can become overwhelming, especially with long-term therapy. To protect patients from insolvency, several agencies have arisen to provide stopgap financing. The caveat: Most receive funds through corporate grants, community foundations and individual donations that are allocated into various disease categories. When the money in a category is exhausted, patients must wait for the next round of funding.

Founded in the 1940s, CancerCare is one of the oldest cancer support organizations. In addition to getting limited disease-specific copay assistance, patients can receive help with home care, transportation and child care. “They’re small grants because so many people from all over the country apply,” says Jane Levy, director of patient assistance programs. “But we feel they’re helpful.”

The agency also offers professional counseling at no cost, either face-to-face in their New York, New Jersey and Connecticut offices or over the phone. To apply for financial aid, CancerCare asks patients to call the toll-free hotline (800-813-4673) and speak to a social worker who will help them complete a brief application.

As is true with most aid from these organizations, extras such as wigs, cooling caps and compression pumps are covered only in very restricted instances, Levy says. She urges patients to call for details on CancerCare’s benefits. “Even if we don’t have a service available, we will help them find it from another source,” she says.

The HealthWell Foundation focuses on helping patients with prescription drug copayments, deductibles and health insurance premiums. Like CancerCare, funds are divided into disease categories. An independent review panel decides how much funding each category should receive. “We look at the landscape within each disease area and try to spread as much out as possible to the patients in those spaces,” says Krista Zodet, president.

Good Days was founded in 2003 by a business executive who was stunned by the out-of-pocket costs for his Crohn’s disease medication and decided to help others who had to choose between the costs of everyday living and affording their medication. “Since then, we’ve provided about $1.2 billion in financial assistance across various disease categories,” says Clorinda Walley, executive director. “We’ve focused in on chronic and life-altering diseases, like cancers, because they can be some of the most expensive to treat, including non-small cell lung cancer, Hodgkin lymphoma, breast and colorectal cancers, myelodysplastic syndrome and myelofibrosis.”

As with other agencies, the amount of money provided is not unlimited and depends on diagnosis. In addition to covering the price of medications, Good Days helps patients who must leave their hometowns for therapy. “When one of our patients needs to travel more than 100 miles for treatment, we act as a travel coordinator, ensuring their lodging is as close to the hospital as possible and that they get to their appointments on time,” says Walley. “That’s especially important for older people who may be on a fixed income and have limited means of transportation.

“I have yet to hear a financial adviser ask a client if they’d like to plan their retirement with or without cancer,” she adds.

An enrollment application is available on the Good Days website, but Walley recommends speaking with a patient navigator beforehand to determine eligibility, personal needs and whether funding exists. “If we don’t have the resources for their specific diagnosis, we try to identify who does, and we’ll help them connect,” says Walley. “I believe that as humans, we have a fundamental responsibility to take care of the people around us.”

Family Reach employs a different model to disburse funding to patients with cancer: It relies on social workers at hospitals around the country to perform a kind of financial triage, identifying those most in need of services. “We differ in that we step in to pay major bills such as mortgage, rent and car payments,” says Carla Tardif, chief executive officer. “We don’t have a long application process. When these families need help, they’re in crisis. They don’t have time to go back and collect pay stubs and tax returns.”

Tardif’s goal is to reduce the stigma that patients sometimes feel when seeking financial help. “Cancer is a really lonely place to be, and sadly, many people are reticent to talk about finances,” Tardif says. “There’s a lot of shame around it. We want to get out there and raise awareness of the issues so that people feel comfortable talking about it and ask for help earlier.”

Many patients with cancer don’t talk about finances because they fear it will compromise their care, Tardif says: “Families say, ‘I’m afraid I’ll get a less-strong drug or won’t be offered a certain procedure.’” She notes that physicians, too, are often hesitant to discuss finances, which means the job of discussing payment often falls to social workers. “That’s not what they’re trained to do,” she says.

To help educate patients about financial toxicity and point them toward solutions, Family Reach is ramping up its outreach programs, Tardif says. “We’re also training ourselves in navigation, so if patients hear about us but aren’t affiliated with one of our hospitals, we can still help in some way — making sure they’re on the right insurance plan or connecting them with resources in their area,” she says.

All the above organizations have their own criteria for acceptance into financial aid programs. Some require that the patient have insurance coverage, while others cover only specific conditions. In general, patients must:

• Have a diagnosis of cancer confirmed by an oncology health care provider.

• Live in the United States or Puerto Rico.

• Meet income eligibility guidelines based on the federal poverty level (usually between 250 to 500 percent).

The positive effects financial aid organizations have for patients with cancer extends to those who work for the agencies, as well. “Speaking for my staff, myself and our board, we’re very humbly proud of the services we provide for our patients,” Zodet says. “At the end of the day, knowing we’ve been able to help them is so powerful, and it helps keep us motivated to keep doing the work we do.”

Charitable organizations offer help to patients who are struggling.

Financial Lifelines

A cancer diagnosis is a life-changing event for anyone, but for men with prostate cancer and other pelvic malignancies, the long-term effects of the disease and its treatments can be particularly challenging. In the aftermath of treatment, men not only can experience distressing physical and psychological effects, but many also have their first experiences with sexual dysfunction.

This distressing side effect can result from treatments for bladder, colon, rectal or penile cancer, but men treated for prostate cancer have especially high rates of sexual dysfunction, as high as 75 to 85 percent, depending on the situation. Causes across this spectrum of cancers can include low testosterone levels due to hormone therapy, chemotherapy or radiation; damage to nerves near the prostate as a result of surgery or chemotherapy; compromised blood flow to the penis due to surgery or radiation; and surgical damage to nerves that control semen outflow.

Unfortunately, the topic’s sensitive nature and a lack of accurate information can keep men from getting the help they need.

Until the ‘80s, permanent impotence was considered an unfortunate but inevitable byproduct of prostatectomy. But in 1977, after studying ways to lessen the bleeding that often accompanied the procedure, Johns Hopkins Urologist in Chief Patrick C. Walsh, M.D., was stunned to learn that one of his surgical patients had regained sexual function. Walsh subsequently developed what have become standard nerve-sparing techniques for the operation, performing the first one himself in 1982. Nerve-sparing techniques can also be used in radical cystectomies and in lymph node removal for testicular cancer.

The complicating factor in nerve-sparing prostatectomy is that the nerves are microscopic, which presents a significant challenge to the surgeon, says Andrew Matthew, Ph.D., C.Psych., a psychologist at the Prostate Cancer Rehabilitation Clinic at the University of Toronto’s Princess Margaret Cancer Centre. In addition, the nerve bundles are extremely delicate, and any manipulation inevitably results in some damage. “Removing the nerves from the sides of the prostate traumatizes them so they’re no longer functional for a period of time,” he notes. “It’s quite difficult to determine how much damage has been done to either or both bundles after the procedure.” Further complicating matters: Prostatic nerves can also be disturbed during other procedures, such as surgery for bladder or rectal cancer.

The amount of inflammation and nerve injury directly translates to how long it will take for the nerves to recover, and until they do, men will experience erectile problems. To say that this is distressing for most men is an understatement, especially for younger men. “With the advent of PSA (prostate-specific antigen) tests (of the blood to screen for the disease), we’ve seen more and more young guys diagnosed with prostate cancer in the last decade,” notes Jeffrey Albaugh, Ph.D., APRN, CUCNS, director of sexual health at NorthShore Medical Group in Evanston, Illinois. “They generally do better in terms of recovery, even those in their 40s and 50s, but we still can’t predict how each patient will do.”

Radiation therapy can hit spots near the prostate and seminal vesicles when it’s used in treatment for rectal, bladder or prostate cancer. While it represents a non-surgical alternative to prostatectomy in prostate cancer, it still comes with a risk of sexual dysfunction.

“The same nerves that are damaged by surgery are often within the field of the beam, and can be damaged by the radiation,” says Matthew. The side effects of radiation therapy often develop more gradually, so men may see a decline in erection quality for a few years after the procedure. After about four years, the incidence of erectile problems is about the same for those treated with either surgery or radiation. Another form of radiation therapy called brachytherapy, in which small radioactive “seeds” are placed directly into the prostate, seems to have fewer negative effects than external beam radiation, says Matthew.

Lastly, hormone therapy — also known as androgen deprivation therapy &mdash; which lowers the amount of testosterone in the body, can also be used to treat prostate cancer. Because testosterone stimulates the growth of prostate cancer cells, depriving them of it can slow their growth or even cause tumors to shrink. But as Matthew notes, the technique has “quite a broad side effect profile, and the one that seems to be the most problematic for men is the loss of sex drive.” Erectile dysfunction can also be a problem, along with hot flashes, fatigue and a side effect called loss of stoic expression, which can cause men to tear up in emotional situations.

Because of the undesirable side effects, practitioners will sometimes suspend hormone treatment for a period of time, says Frank delaRama, R.N., M.S.N., a clinical nurse specialist who serves as a prostate cancer navigator for patients at Palo Alto Medical Foundation. “Some guys are on the drugs for many months, so if their PSA levels are OK, we’ll take them off hormones temporarily just to give them a break,” he says. “Of course, if you’re on hormones and radiation, that can be more complicated.”

Postsurgical urinary incontinence, although usually temporary, can be another unpleasant side effect. “About a third leak urine when they climax, even if they don’t leak at other times,” says Albaugh. “That can be a huge issue for some men.” Chicago attorney Jim Schraidt can confirm that. Schraidt, who had a prostatectomy in 2010, found that “I had a persistent problem of leaking urine during sexual activity, which nobody had said anything about.”

Urinary incontinence can also be a complication of tumors in other areas, such as the lungs and spine, and their treatments.

Doing pelvic floor strengthening exercises before and during the treatment period may help prevent these problems.

The more time that passes after treatment, the more likely erection pills called PDE5 inhibitors will be effective, says Matthew, and physicians will often prescribe them first, as they’re the least invasive. Better known to consumers by their brand names of Viagra, Levitra and Cialis, among others, the drugs have revolutionized the treatment of male sexual dysfunction and can be used by prostatectomy patients, as well as patients with bladder cancer whose prostates have been removed and patients with colorectal cancer. Says Matthew: “They require some nerve function in order to work, so they don’t usually have any effect immediately following surgery.”

For those who’d like more immediate results, there is an option that can be used sooner: penile injections. “Most men have to be kind of desperate to get to the point where they’ll consider it,” says Anne Katz, Ph.D., R.N., a certified sexuality counselor, clinical nurse specialist and author of “Man Cancer Sex.” “But it’s the most effective intervention we have; it acts on a purely mechanical level. It’s actually not that painful, especially after men get used to it, and it’s relatively cheap.”

The injected medication works by dilating the arteries of the penis, says Matthew. “It’s not dependent on the nerves; it’s a localized agent that draws blood directly into the penis, so it’s usually quite effective, in the range of 90 percent or so. And it can be used very early on.”

Albaugh notes that the success rate is the same for all cancer- related types of erectile dysfunction. Schraidt began injections six weeks after his procedure, and continues to use them now after PDE5 inhibitors proved ineffective. Another alternative to pills is a therapy called MUSE (Medicated Urethral System for Erection), a “microsuppository we insert into the urethra at the tip of the penis,” Matthew explains. “Like injections, it uses a localized agent that draws blood into the penis, and works in about 50 percent of men who’ve had radical prostatectomy.” The drug starts to work in five to 20 minutes and produces an erection that lasts about an hour.

Vacuum devices — so-called penis pumps &mdash; can be used to cause erections by evacuating air from a cylinder and creating a vacuum around the penis, then placing a ring around the base to maintain the erection.

The most invasive solutions, used only when others don’t work, involve surgical placement of implants into the penis, such as flexible silicone rods that give the bearer a permanent, semi-rigid erection. The rods are bent upward for sexual activity and downward when not in use. Inflatable penile implants are another option: Tubes are inserted that can be inflated with saline solution using a small manual pump implanted under the loose skin of the scrotum.

In the aggregate, treatments for sexual dysfunction after prostate cancer have a reasonably high success rate. “About 20 to 25 percent of men will have a return of natural function sufficient to maintain an erection,” says Matthew, “although it usually won’t be as firm as before treatment. We can increase that significantly with the use of PDE5 inhibitors, although older men and those with vascular problems are less likely to respond to them. But if you’re young and had strong erectile function prior to treatment, you’re going to be up in the 80 percent range.” Success rates are similar for other types of cancers as well, says Matthew, depending on the amount of nerve damage done during the initial procedure.

On an individual basis, recovery depends on many factors, pointing out the need for clear communication between doctor and patient before a procedure. For instance, many men are surprised to find that they can still reach orgasm, although there’s no erection or any fluid expelled, says Katz. That’s true for patients treated for bladder, rectal and colon cancer, as well, says Matthew, because the nerves that allow orgasm usually remain intact. But Schraidt, who still struggles to reach orgasm, says he wasn’t informed of all the possible consequences beforehand. “Men need to have correct and full information to make an informed choice, and in my case it was very much lacking,” he says.

Matthew believes that many physicians don’t receive enough training in dealing with sexual issues, and, like patients, may have their own insecurities about broaching the subject. Katz agrees, but points out that “if you know that sexual side effects are frequent and likely to happen, you’ve got to talk to the patient about it. Avoiding the issue is not helpful.” Schraidt was so devastated by the changes in his body that he contemplated suicide at one point.

“I was just miserable for a couple of years,” he remembers. “I couldn’t even sit through a dinner with close friends.” Fortunately, he mustered the will to call his doctor and was referred to a mental health counselor. After a stint in therapy and a course of antidepressants, he joined a support group and is now its facilitator. “I was never a believer in drugs, but now I know there are times when you need them, and you should get them,” he says.

Therapy can also help with the interpersonal communication that often affects couples after a man’s surgery. “Without communication, the whole area of sexuality in the relationship suffers,” says Matthew. The same is true of gay couples, who may not seek treatment because of the fear of stigma, Katz says. “I use the word ‘partner’ when talking to couples, and one of the patients I’m seeing told me it made a huge difference, because it told him it was OK to bring his partner along when he had treatment.”

For men contemplating their options before treatment, the message is clear: Do as much research as you can, and don’t be afraid to ask questions. As Albaugh puts it, “Understanding the good, bad and ugly — the pros and cons of it all &mdash; is vital in being able to make informed decisions.”

Nerve and other damage from cancer treatments can impair men’s sexual function, and adjusting can be a challenge.

Hitting a Nerve: Nerve Damage From Cancer Treatment Can Impair Sexual Function

Diagnosed with cancer when she was already having financial difficulties, MARIANNE MORGAN was able to complete her medical treatments with help from the nonprofit HealthWell, which provides grants to eligible patients. - PHOTO BY STEPHANIE BOUGH

It was 2009, and Marianne Morgan was having a bad year. A manufacturing business she ran with her partner was failing, and the resulting lack of income caused them to lose their home. Being diagnosed with breast cancer was almost too much to bear.

“I went to pick up my medication, and it came to $480, which I didn’t have,” she remembers. “I went home and told my partner, ‘I can’t afford this; we don’t have the money.’ I felt like I’d reached the bottom of the barrel.”

Morgan is by no means alone. According to the American Cancer Society, the total direct cost of cancer treatment in the United States was $88.7 billion in 2011. Since then, costs have continued to rise.

New and promising drugs and treatments are rapidly being brought to market, but often come with astronomical costs. According to a study by the National Bureau of Economic Research, the average price of new drugs has been increasing by 10 percent annually since 1995, or about $8,500 a year.

Cancer care can be particularly expensive, with some of the newer targeted drugs or immunotherapies — often only part of a patient’s medication regimen &mdash; costing in the neighborhood of $100,000 for a year’s worth of treatment. The amount patients are reimbursed for these costs can vary, depending on their insurers and plans.

The prevalence of such health care woes has resulted in a new term: financial toxicity, defined as any financial harm that patients experience as a result of the cost of their treatment.

Luckily, there are many nonprofit organizations set up with the goal of helping patients pay for the variety of costs associated with therapy. A good place to start is NeedyMeds (

), a clearinghouse where patients and survivors can find out what kind of assistance is available to them. In addition, the Cancer Financial Assistance Coalition (

) allows patients to enter a zip code and/or a diagnosis to search for groups that may be able to provide financial or other types of aid.

The nonprofit HealthWell Foundation is one organization that might show up in such a search. “Our founders recognized the need to help patients in the early 2000s,” says Krista Zodet, HealthWell president. “So many people were calling and telling us they couldn’t afford their medication, even though they had insurance. We’ve gotten to know many of them quite well through our interactions, and it’s humbling to know that you’re helping not just individual patients, but their families, as well.”

The reason this help is needed so much is not strictly that some patients are uninsured. In fact, thanks to the Affordable Care Act, the number of uninsured patients has dropped dramatically, which is certainly good news. Unfortunately, many U.S. companies are gradually raising health insurance deductibles and premiums, transferring more health care costs to employees. Those who buy their own health insurance face the same issues, with more affordable plans requiring patients to bear more of the cost of their care.

“The group I’m most concerned about — a group that often goes unnoticed &mdash; are underinsured patients, says Yousuf Zafar, M.D., a health services researcher at Duke Cancer Institute. “Although they have insurance, it’s insufficient to cover their health care costs. They don’t always qualify for assistance programs or free drug programs, because they have some income and insurance. But they’re paying at least 10 to 20 percent more of their take-home income on out-of-pocket costs, which is the very definition of underinsurance.”

Why, meanwhile, are drug prices accelerating at such a rapid rate? The reasons are manifold, Zafar says. “Manufacturers will tell you that the drugs they’re bringing to market are much more expensive to develop and test,” he says. “Biologic therapies, which now comprise at least half of the oncology market, and immunotherapies, which are growing in terms of market share, are helping to drive the increases.”

Another factor is demand, says Zafar. The price of many anticancer drugs and others has actually increased many, many times over after entering the market, because the manufacturers are pricing them to match demand. Those price hikes have made cancer one of the most expensive conditions to treat.

What many cancer patients don’t know is that there’s a wide range of organizations to help them navigate the complicated maze of insurance requirements, point them toward vital resources and even assist them with bills.

NeedyMeds can help patients find a variety of such resources. Started nearly 20 years ago by Rich Sagall, M.D., NeedyMeds has gone from a weekend project to an organization with 27 employees that fields more than 6,000 calls a month on its hotline.

“I’d had a few patients who knew something was wrong, but didn’t want to bankrupt the family, so they didn’t come in until it was too late,” says Sagall. “Then a friend who’s a medical social worker told me about patient assistance programs, which I had never heard of. I had just learned to design and build websites, so I thought I could help people by getting the word out about the programs.”

Today, NeedyMeds.com is an exhaustive guide to financial resources that might otherwise fly under a patient’s radar. Additionally, the organization offers a free pharmacy card accepted at more than 63,000 pharmacies, which Sagall notes can save the cardholder up to 80 percent on over-the-counter and prescription medications, as well as prescribed medical supplies.

CancerCare is an organization that helps meet the needs of patients with cancer, providing them access to professional oncology social workers, support groups, cancer-related publications and financial assistance for their treatment-related expenses. Levy explains that “we help patients by assisting them with co-payments for certain approved medications, as well as treatment-related costs such as transportation, home care and child care.”

As is typical with other aid organizations, CancerCare requires applicants to complete an assessment for financial aid or counseling by giving the information to an oncology social worker via its toll-free HopeLine (800-813-4673).

“You have to be a patient with cancer in active treatment, and you must fit our financial guidelines for financial assistance,” Levy explains. A prospective beneficiary’s oncologist or other member of his or her health care team must confirm the diagnosis and treatment on an application, which is sent to the patient immediately after the initial phone conversation.

“Some of the programs do have restrictions,” notes Levy, “because our funders have criteria. Usually, we help people with incomes between 250 to 400 percent of the federal poverty level guidelines.” Co-pay assistance is disease-specific, and the amount of funding depends on the current state of grants for that disease.

CancerCare’s funding comes from corporate and community entities such as the Susan G. Komen foundation and Avon, as well as the organization’s own fundraising efforts, according to Levy. Patients can consult CancerCare’s website (

) to see what funding is available in their areas or for their disease states. Information on co-pay assistance is also available at cancercarecopay.org or 866-55-COPAY.

Similarly, assistance programs at HealthWell are set up by disease category, and, like CancerCare, it receives grants to help patients with specific diseases. “The majority of our funding comes from manufacturers who want to assist patients they can’t otherwise help,” says Zodet.

Medicare and Medicaid patients aren’t eligible for direct financial aid from pharmaceutical companies, so organizations such as HealthWell facilitate financial assistance to patients, directing resources where they’re needed.

“We’re fully independent from our donors, so upon receipt, the donation is assigned to a specific, agreed-upon fund and then disbursed to patients,” Zodet explains. “HealthWell manages the product lists, definitions and all other aspects of the funds.”

The organization’s criteria are similar to those of other agencies: Applicants must meet HealthWell’s income threshold, which is 400 to 500 percent of the federal poverty level. They must also have insurance, and it must cover the product for which they’re seeking assistance. As at CancerCare, applications for services can be completed on the website or over the phone.

“When they call the hotline, they’re asked the same questions as they would be in our online process, and our agents manage the screening on our side. Applicants learn immediately if they have been approved for a grant,” says Zodet.

Morgan learned of HealthWell from a pharmacist at her cancer center who gave her a list of financial aid organizations. Asking for help wasn’t easy. “I had always been someone who contributed to charity; I never thought I’d be someone who needed it,” says Morgan. “But at that point, there was nowhere else to go.”

With help from HealthWell, she was able to successfully complete her treatment and is now cancer-free. Morgan recently turned 76 years old, and notes that she was able to celebrate thanks to the aid she received. “It nearly brings tears to my eyes to know there are people and foundations out there who can come and lift you up,” she says.

While it’s good to know these agencies are there if needed, Zafar suggests that patients who think they may have trouble paying bills inform their physicians at the outset. He notes that hospitals and clinics employ financial counselors and social workers who can intervene on a patient’s behalf before money problems spiral out of control. In addition, the federal Hill-Burton Act requires many health care facilities to provide a certain amount of free or low-cost care each year.

However, Zafar points out that many patients are reluctant to approach their doctor about finances, either because of embarrassment or a fear that it could compromise their treatment. In addition, physicians have traditionally not been very involved in the financial end of their professions.

“We providers need to be involved in the process and engage with patients about costs,” he says. “When we discuss the goals of care with patients, we should understand that sometimes the cost of treatment might play a role in that discussion.”

As for what can be done about the increasing price of medications and treatment, Zafar believes the solution must be multifactorial, involving all stakeholders. The ability to negotiate drug prices must be on the table, which means involving the pharmaceutical industry. Insurance companies must be more creative in offering their customers novel solutions without increasing the cost-sharing burden. The development of biosimilar drugs, generic equivalents of expensive biological therapies, will hopefully lower their costs.

As Sagall says, “No one should ever have to make a choice between paying rent and buying food or getting their prescriptions filled.”

Many nonprofit organizations aid patients in paying for their cancer drugs or health insurance.

Author | Mark Cantrell

From War to an Even Bigger Battle

Financial Lifelines

Hitting a Nerve: Nerve Damage From Cancer Treatment Can Impair Sexual Function

Sweet Charity: Nonprofits Help Pay for Cancer Drugs, Insurance