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.

Sweet Charity: Nonprofits Help Pay for Cancer Drugs, Insurance

When terrorists attacked the World Trade Center on September 11, 2001, killing nearly 3,000 people and injuring almost 9,000 more, it wasn’t the end of the tragedy. In the days and weeks to come, thousands of emergency workers — firefighters, police officers, construction workers and private citizens &mdash; descended on Lower Manhattan to aid in rescue and recovery efforts. Some are still paying a heavy price for their service.

Unknown to them, the Twin Towers were built using a toxic mix of asbestos-laden building products that pulverized into a fine dust when they came down.

Like some veterans of the U.S. military, many 9/11 responders have experienced illnesses they believe to have stemmed from the contaminants they inhaled during their service that day, and in the days that followed. And like military veterans, some of them are receiving health care for those conditions that is provided by the government.

Two days after the attacks, the U.S. Environmental Protection Agency issued a statement that the air was safe to breathe — an assertion that turned out to be incorrect. Of the more than 40,000 people who responded that day and in the weeks to come, some 70 percent have experienced lung problems.

“We have seen a few cases of mesothelioma, but mostly what I’m seeing is lung cancer,” says Raja M. Flores, professor and chief of thoracic surgery at Mount Sinai Medical Center in New York. Flores notes that it can take several years for symptoms to manifest. “I think in the next 10 or 15 years, we’ll be learning a lot more about the kinds of diseases you can get from pulverized concrete and steel,” he says.

Brian G.M. Durie, an attending physician at Cedars-Sinai and chairman of the International Myeloma Foundation, explains that a statistical approach, comparing cancers that would be expected in the general population versus those that emerge in first responders, can make a strong case. “With 9/11,” he says, “there were many more cases of myeloma than you would expect in people who weren’t exposed.”

Demolition expert John Feal was working at Ground Zero on September 17 when a 3,000-pound piece of steel crushed his left foot, which was later amputated. At first, he was denied benefits because his injury occurred outside the timeframe of the initial Sept. 11 Victim Compensation Fund, which was created by an act of Congress and active from 2001 through 2004. Feal filed a lawsuit and won, and then began helping other responders to seek restitution for their health problems or economic losses. One issue they faced was that health care and financial compensation programs for those affected by 9/11 did not automatically recognize that some cancers could have arisen from exposure at crash sites.

“Right now, there are more than 6,000 people with 9/11-related cancer,” Feal says. “We know of about 1,800 people who have passed away since the attack from cancer and other lung diseases. I’ve walked the halls of Congress for more than six years, fighting for first responders’ benefits.”

Former Daily Show host Jon Stewart was one New Yorker who took notice and joined Feal in the fight. In a statement for this article, Stewart said: “These folks got sick because of their selflessness…they remain in the shadows and in need of help because of our selfishness.”

Feal was there when, in December 2010, Congress finally passed the James Zadroga Act, allocating $4.2 billion for first responder health care and financial losses due to an inability to work. In 2012, cancer was added to the bill; covered types can be found at cdc.gov/wtc/coveredcancers.html.

The Zadroga Act established the WTC Health Program, which consists of a Responder Program for first responders and a Survivor Program for those caught in the aftermath of the disaster; this replaced two earlier health care programs established by the government and the Red Cross. The act also reinstituted the Victim Compensation Fund to help those who experienced economic losses because of 9/11-related illnesses.

To be considered for coverage, responders or their relatives need to prove they were present at a “9/11 crash site” and suffered “physical harm or death as a result of” their presence, while survivors must have been within 1.5 miles of the attack. A review process is available, however. For certain cancers to be considered related to 9/11, they must be shown to have developed a certain amount of time after the tragedy — .4 years for leukemia, for instance, versus 14 years for mesothelioma.

In December 2015, the Zadroga Act was extended for 75 years, reauthorizing both the health program and the Victim Compensation Fund at a price of $8.1 billion. Prospective claimants now have until December 18, 2020 to file for benefits. Applicants can call 1-855-885-1555 to learn more. To contact the WTC Health Program, visit nyc.gov/html/doh/wtc/html/contact/contact.shtml or call 888-982-4748.

With the battle for coverage won, Durie would like to go one step further, establishing a monitoring program for responders not yet diagnosed; only limited screening has been available under past health care programs for this population.

“We strongly advocate a screening and prevention program that would catch these cancers early,” he says. “It would not only help prevent some cases, but also reduce the cost of treatment.”

Thousands of first responders and citizens developed cancer following the September 11 terror attacks. 

Rescuing the Rescuers: The Effort to Cover and Monitor 9/11 Responders for Lung Disease and Cancer

Military service is an inherently dangerous occupation, especially for service members who find themselves on the front lines of a conflict. Those who sign up to place themselves in harm’s way are well aware of the risk, but they expect it to come from the enemy. In some wars, however, other factors can cause disabilities long after a soldier has returned home.

During the war in Vietnam, the Department of Defense began a program called Operation Ranch Hand to deprive North Vietnamese and Viet Cong soldiers of cover in the dense tropical overgrowth. From 1962 until 1971, Air Force planes sprayed some 19 million gallons of herbicide on the jungles of Southeast Asia, including about 11 million gallons of a toxic cocktail known as Agent Orange.

Used in concentrations 27 times higher than in typical weedkilling applications, the poison had its intended effect, defoliating thousands of acres, but it also exposed thousands of service members. Whether or not the military understood the risk to its personnel is a matter of debate, but there is some evidence that Air Force officials knew of the danger as early as 1967. Shortly after returning from the war, some veterans began to report symptoms such as rashes, numbness and nausea. Others had children with rare birth defects, while still others developed cancer. Some veterans suspected Agent Orange was the cause, and began a long fight to prove it.

In the meantime, those affected, and others facing service-related illnesses in the years since, began a long relationship with doctors and, in many cases, the Veterans Health Administration — a dynamic that has brought them both support and challenges.

Peter Sills, author of "Toxic War: The Story of Agent Orange," explains that it wasn’t the herbicides in the mix that were deadly, it was the dioxin that was inadvertently created in the manufacturing process. “Every time you create a chemical process with chlorine and a carbon-based compound, you wind up with some kind of dioxin,” he says. “And the process of making Agent Orange resulted in the most toxic form, known as 2,3,7,8-TCDD.”

Among the deadliest chemicals known to science, dioxins can cause health problems at very low doses, and are fat-soluble, so they accumulate in human tissue over time. “When sprayed from aircraft as it was in Vietnam, it gets atomized into tiny droplets that can spread for miles,” says Sills. “It’s been known to travel 25 or 30 miles, and you’d never know you’d been exposed.”

Karl Pritchard was serving in a Navy electronic countermeasures squadron at Tan Son Nhut Air Base in 1962, interdicting Chinese aircraft attempting to bring supplies to the North Vietnamese. “We were living in tents at the end of the runway, waiting for the call to scramble,” he remembers. Unknown to him, Operation Ranch Hand had begun at the base in January and was now in full swing. “Nobody told us what they were using or where they were using it,” says Pritchard.

In late 2013 he began having back pain and blood in his urine, which his doctor attributed to kidney stones. A CT scan disproved that diagnosis; instead, he learned he had aggressive bladder cancer.

Some of the several million men and women who served in Middle East conflicts are experiencing their own cancer challenges. Instead of Agent Orange, many believe it’s due to their exposure to war-specific environmental hazards during their tours of duty. Thomas Berger, executive director of The Veterans Health Council, a nonprofit aimed at educating veterans about health issues and care, says that “those who were downwind when we blew up Saddam’s ammo stores, which contained sarin gas and other nasty stuff,” are at particular risk of developing health problems. Burn pits and depleted uranium ammunition were additional disease vectors for these American soldiers, he says.

Tim Smith was stationed at Forward Operating Base (FOB) St. Michael near Al Mahmudiyah in 2004, where open burn pits were kept going around the clock. “Anything from plastic to dead animals to unexploded IEDs went in there,” he remembers. “We were all breathing the smoke from that stuff 24/7.” None of the soldiers were issued respirators, he says, and they weren’t warned that breathing the smoke might be hazardous. “At the time, we were just trying to stay alive,” says Smith. “We weren’t really thinking about long-term consequences.”

Upon his return to the U.S., Smith started a cleaning business and began hiring veterans. At the beginning of 2016 he developed a dry cough, and a CT scan revealed a nodule on his right lung that turned out to be malignant. A biopsy during surgery showed the cancer had spread to his lymph nodes, requiring a regimen of chemotherapy. The diagnosis was both a shock and a puzzle, since Smith had never smoked and was an athlete in college.

Pritchard responded to his cancer diagnosis by following doctors’ recommendations that he have his bladder removed, but a subsequent scan showed the cancer had metastasized, and doctors told him there was little they could do that would be effective. “So I went home and started waiting to die,” he says. But after hearing of a clinical trial of the immunotherapy drug Tecentriq (atezolizumab), Pritchard enrolled and began receiving treatment. “About eight months after I started, they couldn’t find cancer in me anywhere,” he says. “That’s been the case for about a year now.”

Pritchard didn’t consider a Veterans Administration hospital for his treatment, though, because of an earlier unsatisfactory experience, combined with the long wait times veterans often encounter. “I’ve lost faith in them because of all the problems they have,” he says. “I heard some guys were waiting up to two years to get an appointment.”

Medicare and a military health insurance program, Tricare for Life, have covered most of his expenses, Pritchard notes.

Tricare, which largely pays for private health care, is not connected to the VA, but is part of a separate health care system meant for active-duty soldiers or those who served for 20 years or more and then retired. That military system is free for active-duty soldiers, but retirees must pay enrollment fees and co-payments.

The government-owned and -run VA, on the other hand — which includes about 1,700 hospitals and other facilities that treat 9 million vets a year &mdash; is designed to be the first stop for sick former soldiers who served for at least two years, especially those who have medically intensive conditions such as cancer. Under the system, care and medications for service-related illnesses &mdash; including cancer drugs &mdash; are provided at no charge or with a co-pay, depending on eligibility.

Participating veterans must complete a financial assessment during enrollment to determine whether or not they must pay. Enrollees are assigned to one of eight priority groups based on their disability status, income and other factors, with the aim of balancing needs with resources and making sure the sickest vets get treatment first. Veterans with service-related disabilities are assigned to the highest levels.

This means that coverage may be insufficient for some veterans, or that some may not be permitted to enroll at all. In addition, their ability to get care that is funded by the VA but administered outside the system by private providers tends to be limited. If eligible for both programs, veterans are allowed to use both Tricare and the VA. Some, like Pritchard, end up relying on health coverage provided by neither the military nor the VA: About half of all vets have private health insurance, in some cases through their employers or unions. One in 10 veterans under the age of 65 is uninsured.

Veterans aged 65 years or older, however, are eligible for Medicare. In fact, even if they already have Tricare, the VA recommends that these veterans also enroll in Medicare in order to broaden and strengthen their overall coverage, according to the AARP. For some covered by Tricare, this dual enrollment may be required.

While the VA’s primary function is to tend to the soldiers most badly injured during their time of service, it wasn’t there to support some soldiers after Vietnam. When many returning Vietnam veterans began to develop health problems after the war, the government refused to acknowledge that Agent Orange was to blame. Soldiers who had fought the Viet Cong in Southeast Asia now found themselves fighting the agency charged with their care. About half the American soldiers who served in Vietnam, 1.5 million, were present there during the U.S. military’s most liberal use of herbicides, according to the American Cancer Society.

In 1979, a veterans’ group filed a lawsuit against the manufacturers of Agent Orange, and in 1984, seven of those companies agreed to pay $180 million. Meanwhile, a 1981 U.S. government act directed the VA to provide medical care to soldiers exposed to Agent Orange during active duty, even without medical evidence of a connection, as long as there was no proof that something other than the herbicide had caused their illnesses. And in 1991, Congress passed the Agent Orange Act, directing the VA to presume that specific diseases could be tied to chemical exposure related to the service of these soldiers in Vietnam.

Why did it take so long to begin the process of compensating veterans for their illnesses? In a word, proof. Until laws started emerging to support their claims, the burden of proving that a health problem was service-related fell solely on the service member. Initially, the Department of Defense maintained that only the crews of the aircraft that sprayed it had been exposed to Agent Orange, and studies on the chemical’s effects at the time were inconclusive.

Since then, there has been much more research done on Vietnam and Gulf War health issues, both through human studies and in laboratories. According to the American Society of Clinical Oncology (ASCO), studies of Agent Orange have been hampered by the relatively small number of veterans who were exposed. Many of the human studies have produced mixed results, although laboratory research has more definitively indicated that exposure to dioxin can create tumors in mice and alter the genes that govern cell growth in human tissue.

In the 1990s, the Health and Medicine Division of the National Academies of Sciences, Engineering and Medicine began issuing a biyearly report on the association between Agent Orange exposure and various diseases. The cancer section of the report released in 2016, under the heading “Sufficient evidence of an association,” lists soft tissue sarcoma; non-Hodgkin lymphoma; Hodgkin disease; and chronic lymphocytic leukemia. Respiratory cancers, prostate cancers, bladder cancer and multiple myeloma appear under “Limited/ suggestive evidence of an association.”

On the cancers in the “limited/suggestive evidence” category, Michael Kelley, the VA’s national program director for oncology,says “The evidence summarized in the (National Academies) report is relatively low-level evidence, but the VA decided to give veterans the benefit of the doubt in that regard.”

There is insufficient evidence to link other conditions such as breast, kidney, skin or brain cancers to Agent Orange, the National Academies report says.

The VA-sponsored Post War Mortality from Neurological Disease in Gulf War Veterans study found a possible link, among the 620,000 who served in the Gulf War in 1990-1991, between four conditions — amyotrophic lateral sclerosis, multiple sclerosis, Parkinson’s disease and brain cancer &mdash; and “potentially hazardous environmental exposures during the war, such as oil well fire smoke, chemical and biological warfare agents, prophylactic agents against chemical and biological warfare, multiple vaccinations, depleted uranium, pesticides, and endemic infectious diseases.”

Unfortunately, another major complicating factor is access to care. A 2014 Gallup poll revealed that just over half of veterans who interacted with the VA reported difficulties in obtaining services. The same year, a scandal had broken at the Phoenix VA hospital when it was discovered that the facility was faking its wait-time reports in an attempt to cover up serious delays in care delivery. CNN reported that some 40 veterans died while awaiting services, and soon similar transgressions were uncovered at other VA hospitals. In the Gallup poll, taken after news of the delays was released, some 60 percent said they had lost confidence in the agency’s ability to deliver the care they needed.

In the wake of the scandal, VA Secretary Eric Shinseki resigned in May 2014 and was replaced by Robert McDonald. Then Congress quickly passed the Veterans Access, Choice and Accountability Act, which allows vets to obtain care at commercial health care institutions if a VA slot isn’t available. The act allowed veterans who lived more than 40 miles from a VA clinic or had waited — or were likely to wait &mdash; more than 30 days for treatment to seek help from privatesector providers. (The VA already had a Non-VA Medical Care Program in place, but only on a case-by-case basis.)

Rep. Jeff Miller (R-Florida) championed the Veterans Choice Act, but now says it has been a failure, citing long delays in reimbursement and even more veterans waiting for treatment than before. “The VA has a long history of mismanaging programs, and Choice is no different,” he says. “Its notorious lack of accountability is driving all of the department’s most pressing problems.”

Veterans who are experiencing problems with the system have few options, adds Jim Strickland of the independent veterans’ advocacy group VAWatchdog.org. “Each VA health facility has a patient advocate, but it’s a largely ineffective system,” he says, so the next step should be a complaint to the veteran’s senator or representative. If that doesn’t work, vets can turn to local reporters. “The VA will quickly fix a veteran’s problem if the local or hometown press gets involved,” says Strickland. “Veterans’ law attorneys are another option.”

Staffing shortages have also been a constant limiting factor at the VA; a 2015 USA Today article revealed that eight regional VA health care facilities were suffering vacancy rates of more than 30 percent for critical positions such as doctors and nurses.

The latest bill to attempt a fix is the Veterans First Act, introduced by Sen. Richard Blumenthal (D-Connecticut) and Sen. Johnny Isakson (R-Georgia) in May 2016. The new omnibus would make it easier to fire or discipline bad actors, including senior executives, and expedite their removal. It would protect whistleblowers from retribution, expand support for caregivers, increase access to job training and stop the over-prescription of opioids, among other provisions.

“Veterans battling cancer need a flexible, responsive health care system, and they need to be able to see a doctor without excessive wait times,” says Blumenthal. “This bill will help the VA hire more people, arrange working hours to help doctors serve more people, and streamline administration while increasing patient outreach. Specifically, it will support research into the health effects faced by veterans and their descendants who were exposed to hazardous substances as a result of military service, including various forms of cancer.”

Already, there are signs of change. In an effort to get out ahead of the problem, the VA announced its MyVA program in April 2016. Steven Lieberman, a medical doctor and VA’s national lead for access, explains that “It’s a three-pronged approach to improve access to health care at all VA facilities, particularly for those with urgent needs such as cancer patients.” All VA facilities have committed to optimizing access and are implementing solutions of proven benefit to enhance access. The agency is expanding its use of telehealth, says Lieberman, and is hiring group practice managers who will focus on improving efficiencies within each clinic. “Finally, we’ve been sending out teams to VAs across the country from our Veterans Engineering Resource Center to help re-engineer the way the clinics are run.”

Brian G.M. Durie, chairman of the International Myeloma Foundation, explains that once veterans get a VA appointment, things often improve. “Although there have been scheduling issues for veterans with cancer, once they get access, they actually get pretty good care,” says Durie, a medical oncologist. “Compared to the commercial side, where there are issues of cost, access and other problems, if you’re diagnosed with cancer in the VA system, you can usually get the drugs and treatment you need.” In addition, a 2011 study found that, unlike in the private sector, there is little difference in levels of care provided by the VA based on location.

Matthew Rettig, medical director of the prostate cancer program at the Institute of Urologic Oncology at UCLA, adds that the VA has “social workers and an excellent palliative care service that can provide...emotional and spiritual support and access to mental health experts.”

Until 1997, the VA offered no access to clinical trials, but that year the agency signed an agreement with the National Cancer Institute (NCI) providing coverage to veterans participating in trials at both VA and NCI facilities. Before that time, veterans usually had to enroll in research initiatives at their own expense. Today, a new partnership between the agency and UCLA — the first of its kind &mdash; aims to provide new drugs and treatment methods to veterans. “We’re working to increase access to clinical trials in the VA in several ways, including partnerships with NCI and pharmaceutical companies,” says Kelley.

Another bright spot is the recent announcement of a Cancer Moonshot program headed by Vice President Joe Biden, who lost his son Beau, a National Guard veteran, to brain cancer in 2015. The initiative will see the VA partner with the NCI, the Prostate Cancer Foundation and other entities with the aim of revolutionizing cancer research and care through applied technology. The Department of Energy and IBM are donating time on their supercomputers to accelerate the research process; IBM’s Watson will help match veterans with cutting-edge, precision cancer treatments.

For Tim Smith, the prospective changes are moot: He decided to use his private insurance to obtain treatment after seeing media reports about the VA.

“I wanted to make sure and get this thing taken care of quickly,” he says. “When I heard about the wait-time constraints, I just couldn’t risk it.”

A recent CT scan showed that he is now cancer-free.

If the proposed changes work, perhaps the VA will become the first and best choice for more veterans who need cancer care.

For military veterans with cancer, obtaining government-funded health care can constitute a tough fight. 


Battling for Benefits: Military Veterans With Cancer Fight for Government-Funded Health Care

MARC SILVER didn't know what to say or do to support his wife, MARSHA SILVER, after she was diagnosed with cancer. - PHOTO BY RACHAEL BOER PHOTOGRAPHY

All young couples inevitably experience a rough patch or two in their relationships, but for high school sweethearts Lucas D’Onofrio and Tamara Bruzzo, that obstacle was more of a minefield. When Bruzzo began experiencing chest pain just before Valentine’s Day, she went to a local emergency room for an X-ray and CT scan. D’Onofrio had bought tickets for a romantic dinner and a movie, but when the tests showed a suspicious mass, the couple spent the holiday in the hospital, instead.

When the news finally came — on D’Onofrio’s birthday &mdash; that his girlfriend had non-Hodgkin lymphoma, it was like he’d been hit by a sledgehammer. “It was a huge shocker for me; soul-crushing, really,” he recalls. “My mind just totally froze. I didn’t know how to react.”

That’s not uncommon, says Gary Patton, an oncology counselor at St. Mary’s Regional Cancer Center in Huntington, West Virginia. “Sometimes I’ve seen men, as a result of illness in themselves or a loved one, go into a sort of suspended animation,” he notes. “They don’t know what to do, so they do nothing. And that can cause a whole set of problems by itself.”

Ultimately, men whose partners are diagnosed with cancer may find they need to shift their outlook and develop a new set of skills in order to be good supporters and caregivers, both to their loved ones and to themselves.

With no experience dealing with a life change as daunting as a cancer diagnosis, a man’s first response is often the wrong one. Marc Silver, author of the book Breast Cancer Husband, was at work when his wife called with the news. His reply: “Ew, that doesn’t sound good.” With no time to process the momentous revelation, it was all his mind could come up with. “She called me looking for consolation, comfort and empathy, and those weren’t exactly the words she wanted to hear,” Silver recalls. “Later, she told me she thought she must have called the wrong husband.”

Silver spent the rest of the day at work, trying to figure out what to do. “In retrospect, I should have gone home and been with her,” he says. “But it was easier to be at work, where I was in control. At home, I’d have been entering this unknown terrain, not knowing what I was supposed to say or do.”

To a large degree, men respond to a cancer diagnosis based on the way they were socialized, Patton observes. “You’ll see that men are often engaged by tasks — mowing the lawn, changing the oil in the car &mdash; while women often gravitate toward process.” That may sound stereotypical, but research has shown that the sexes take decidedly different approaches to caregiving, according to Kevin Stein, who holds a doctorate in clinical psychology and is vice president of the American Cancer Society’s Behavioral Research Center. “Our study of 1,500 caregivers showed that men tend to be focused on more pragmatic, less emotional and less psychological issues,” he notes.

When faced with a threat to a loved one, men tend to “go into that primal role of protector and defender,” says Patton. “I’ve had men say to me, ‘If cancer was an actual creature threatening my wife, I’d kill it.’” With no actual enemy in sight, however, the protectors are left with nothing to do, which creates a feeling of helplessness and frustration. To fight that feeling, they sometimes jump to conclusions about what their partners need, and in an effort to help, actually make things worse.

Silver’s wife, Marsha, was diagnosed just before Labor Day weekend, and it would be three long days before they could consult with a surgeon. “She loves books, so I dragged her out to a book festival to cheer her up,” he remembers. “She was bereft and upset the whole time, and I felt like a comedian who was dying onstage. I was trying to make her feel better, and nothing was working.”

That’s because a cancer diagnosis creates a new reality for a couple in which the old ways of communication may no longer work, says Patton. Although men have the best of intentions in doing what they think is necessary, it may not be what their partners need, and that can lead to hurt feelings on both sides. Men end up believing that their efforts are unappreciated, and women feel unheard, he explains, which can cause withdrawal and a further breakdown in communications. Adding to the stress that men can feel after a diagnosis is the sudden change in roles it often entails. “As we know, females tend to be the caregivers in our society. Not to be stereotypical, but that’s the way we’re socialized,” says Rachel Cannady, the American Cancer Society’s strategic director for cancer caregiver support. “When a female partner is diagnosed with cancer, the man becomes one of, if not the, primary caregiver.”

Of course, some men cope with the role reversal better than others, for a number of reasons. When Mike Beck’s wife, Pam, began to experience abdominal pain recently, doctors assumed it was probably diverticulitis, but a follow-up colonoscopy revealed bowel cancer. After surgery, the retired engineer drew on his experience in caregiving from his wife’s previous bout with a pituitary adenoma, making sure the household chores were done and that Pam had everything she needed. “We kind of share in doing everything, so I’m used to doing those sorts of things,” he says. “But I know that some of my friends wouldn’t be at all comfortable driving their wives to appointments, helping them up and down stairs, getting them dressed and doing the cooking and laundry.”

Even after adjusting to the new and unfamiliar duties they need to perform, men often have trouble providing their partners with what can be their most important need: emotional support. Faced with a problem they can’t solve, many men simply shut down emotionally, which is one of the worst things you can do when your partner needs support, says Patton.

“Not knowing the answer to a problem is not something we see as a strength,” he notes. “One of the things I’ve taught men to do is to ask her, in those times when you’re feeling insecure and don’t know what to do, ‘What do you need from me right now?’ Don’t assume and don’t project: Just ask. Perhaps she’ll want you to simply sit there with her for a while, or even tell you she needs to be alone for a few minutes. Allowing yourself to be vulnerable lets you ask the right questions and learn what the other person’s needs really are.”

Being vulnerable doesn’t come naturally to many men, and it requires switching from a task-oriented outlook to a more open, process-centered one, says Patton. It means that while we still take our partners to chemotherapy, get their prescriptions filled and get the housework done, we are also “sitting, holding, watching a movie together, just being there with them,” he advises. “Behind the scenes, this guy who has shut down, who is numb, who is not showing much emotion on the outside, is crumbling on the inside, and she may not see that.” Giving your partner a window into your thoughts can build intimacy and allow for deeper communication, says Patton.

“Someone told me the motto for guys should be ‘Shut up and listen,’” says Silver. “Because with cancer, you can’t fix it, and you’ll go crazy if you try.” His wife is a teacher, and during her chemotherapy regimen, she returned to the classroom. Silver was worried that she might not be up to it, and kept advising her to take more time off. When he finally prevailed and she stayed home for a day, “it was the worst day of her treatment, because all she did was sit and worry,” Silver remembers. “For her, it was much better to be in a classroom, teaching. Cancer was taking so much away from her, and she didn’t want to give up that part of her life.”

When children are involved, the scenario becomes more complicated for male caregivers. Not only does this increase the number of tasks for the caregiver, but there is also the question of how much to tell kids, and when. Giving them too much information at once can be overwhelming, and too little can send their imaginations into overdrive. Once again, listening is key, Patton says.

“Sometimes they tell us how much they want to know. We may tell them that mommy’s in the hospital, and tomorrow she’s having something called surgery. That may be enough for them, and they’ll want to go play,” he says. “Maybe they’ll come back later and ask what surgery is, and we can explain that.”

This is not a time for “tough love,” Patton adds. “Sometimes, as men, we may think, ‘Well, there’s no need to drag this out — let’s just rip off the band-aid and get it all out.’ But if we don’t let them go play or watch television, they’ll shut down emotionally and not hear it anyway. They don’t need to hear us whispering and leaving the room when we talk, because they’ll know something’s up. We need to listen to their signals, and ask them what they think about what we’ve told them.”

One way to help allay their fears is to substitute the word “and” for “but,” says Patton. “If we say ‘Mommy’s sick, but she’s going to be OK,’ it can cause some cognitive dissonance; all they hear is the word ‘but.’ Instead, we can say ‘Mommy is sick, and we believe she’s going to be OK.’ As a child, I can now hear that she’s sick, can also hear that she’s going to be OK, and my mind can comprehend both realities.”

A few psychological tweaks can help caregivers as well, especially right after a loved one’s diagnosis, when our minds immediately begin generating vivid worst-case scenarios. Patton notes that when we have a thought, we conclude it has truth in it and look for ways to support it, a leftover from ancient times when ignoring a lion could be fatal. “What I often tell people in that situation is, ‘Let’s not believe everything we think. Many of the thoughts that go through our minds have no evidence to support them.’”

When a scary thought arises, Patton suggests, rather than simply reacting, we can stop and consider the thought for a moment. Pausing to think about our thoughts and feelings can help us cope much better with concerns and fears that could otherwise spiral out of control. In his book The Feeling Good Handbook, clinical psychiatrist David Burns reveals that many of our negative thoughts arise from cognitive distortions that may have become habitual over the years. He explains that by talking back to those thoughts and substituting more rational ones, we can alleviate much of the stress and anxiety in our lives — even if it comes from a frightening source such as cancer.

Counseling can also be effective in helping men work through the distress of a cancer diagnosis, but studies have shown that they avail themselves of therapy in much smaller numbers than women do. That’s unfortunate, because a good therapist can be your best ally when cancer strikes a significant other. Forget the cartoon psychologist scribbling notes while his patient drones on about his mother — in today’s therapy, the counselor and client address issues as a team.

“I’m not going to make you lie on a couch and talk about your childhood,” says Patton. “I’m going to care about what you’re going through, and we’ll talk in a private setting where you feel respected and cared about, whether you’re a solider coming back from overseas or someone whose wife has an advanced malignancy.”

Often friends will offer to help as well, but in order for that to happen, it’s good to be specific about what’s needed. Because asking can be uncomfortable, Cannady recommends creating an online presence at the ACS’s My Lifeline site, where you can post needed tasks on a web page and people can sign up to do them. She reports that caregivers tend to use the resource even more than the people they’re caring for do, forming enduring communities to help others in similar situations.

Finding such a resource might have helped Lucas D’Onofrio, who had no friends experienced in cancer caregiving to lean on after Tamara was diagnosed. But he did have an idea. “I’d been thinking about proposing long before the whole cancer thing,” he says, and decided to make the leap on the day of her last chemotherapy session. “I felt that ending chemo was closing one chapter in our lives, and I wanted to start a new chapter with her,” he says. Some 20 friends helped create romantic decorations and stage them in a nearby ward, and nurses took Tamara away long enough for the crew to festoon her room with roses, candles and heart-shaped balloons.

When Tamara returned to her room, pushing her IV stand along a trail of rose petals, Lucas was waiting. After a short speech, he got down on one knee, proffered a ring and asked her to marry him. While fireworks provided by Lucas’ brother erupted outside, Tamara said through her tears, “Of course.” When they wed in October, it will be the culmination of a journey that proves that when a couple team up to fight cancer, they can work wonders.

 

Men whose partners are diagnosed with cancer may need to learn new strategies to become effective caregivers. 
