FINANCIAL TOXICITY IS AN increasingly used term that describes the multiple negative consequences of medical care costs on the patient, whether it be for cancer or another serious illness.

It can force patients to cut back on groceries, give up nonessential but important activities such as vacations or gym memberships and even skip medication. Often, they must dip into their savings or retirement funds to help with out-of-pocket costs such as co-pays for medical appointments and prescriptions.

In worst-case scenarios, the added financial burden can disrupt physical and emotional health while increasing debt, possibly leading to bankruptcy — a surprisingly common problem for patients with cancer. Today, there are new mechanisms available to aid patients from several sources such as nonprofit organizations like CancerCare and the HealthWell Foundation, to name a few. Additionally, many pharmaceutical companies are continuing to develop and evolve patient financial assistance programs for anti-cancer agents that they produce. For very high priced drugs &mdash; Keytruda (pembrolizumab), an immunotherapy agent, retails for about $150,000 a year &mdash; companies can offer solutions to defray costs.

Much like the disease itself, navigating the resources associated with cancer can be frustrating. Many organizations have complex rules, long forms, require extensive documentation and information may be hard to access. Patients need advocates, social workers or navigators who hold expertise in these areas, have the connections to make it happen and show compassion for those who are trying to cope with a life-threatening disease.

And, even if all this is addressed, some people with cancer may still be left out of the equation. For instance, people without family support, immigrants or undocumented individuals with cultural or legal issues, younger patients who may not have insurance, such as adolescents and young adults.

® is to serve as a so-called golden key that unlocks doors of opportunities for patients, survivors and their families in dire need. Inside this issue lies pages of assistance of all shapes and sizes — help paying for medication, travel, wigs, scarves, exercise programs and much more.

With these resources, cost should not have to be the barrier standing between a patient and treatment that could really make a difference.

Chair, Department of Breast Medical Oncology 

The University of Texas MD Anderson Cancer Center

Articles

Editor's Page

FINANCIAL TOXICITY IS AN increasingly used term that describes the multiple negative consequences of medical care costs on the patient, whether it be for cancer or another serious illness.
 

The 'Golden Key' to Financial Assistance

Finances can be a challenge for many people. Add a cancer diagnosis to the mix and the plot thickens.

Patients may be forced to choose between buying a medication that could save their life or paying the mortgage so they can keep a roof over their head. It’s a tough call for anyone.

, we offer up dozens of resourc&shy;es that can help those who are struggling to make ends meet while also facing cancer. We dive into the world of nonprofit organizations and pharmaceutical companies that provide financial assistance, as well as highlight the support of people like social workers and nurses, who can advise patients trying to navigate the disease.

In addition to providing funds, programs and organiza&shy;tions help set up lodging, car service or plane rides for those who must travel near or far for treatment. In the past year, for example, Hotel Keys of Hope provided 10,000 free rooms and tens of thousands more at discounted rates. You will hear the stories of patients who benefited from this generosity and are forever grateful.

Also inside: a one-stop guide to national organizations that offer items and services at no cost to patients. Freebies include wigs and other headwear for those who lose their hair from chemotherapy, camps and retreats, yoga classes, home clean&shy;ing services and insurance mediation assistance. Plus, we share tips to make sure patients better their chances of getting what they desire.

Although financial hardship can be experienced by anyone with cancer, the adolescent and young adult (AYA) popula&shy;tion faces an even harder hit. According to research, AYAs with cancer are more than $100,000 behind their peers in average net worth. Their diagnosis can be financially devastating even before they make it into the workforce. This issue highlights organizations that solely help this patient population.

Financial concerns add extra stress for patients and families at a time when emotions are already high, but these fears can be eased. Seek help from the companies and organizations named in this issue. Ask for assistance if something is not eas&shy;ily understood. And recognize that many people are willing to aid patients in their time of need. A lot of funding is there, but you need to know where to go and what to do to obtain it.

We hope this special issue serves as your guide to finding your way 

From the Chairman

In a special issue of CURE® magazine, we focus on financial issues related to cancer care.

Support Is There, If You Seek It

A diagnosis of cancer can be emotionally devastating, but the personal trauma seldom ends there. The overall cost of treatment can be equally catastrophic to a patient’s bank account, especially if that person lacks adequate health insurance, analysts report. It’s not surprising, then, that care-related money issues are frequently cited as the primary cause of personal bankruptcy among families ravaged by cancer.

However, these families don’t have to struggle alone, thanks to organizations that provide free or discounted services and goods to patients battling the disease and struggling to make ends meet.

Total spending for cancer care in the United States was estimated at around $125 billion in 2010 and is projected to increase between 27 and 39 percent by 2020, reported Milliman, an independent actuarial and consulting firm, in a 2017 analysis of care costs specific to breast, lung and colorectal cancers.

When cancer strikes, the financial impact can be immediate. The study, commissioned by Pfizer, tracked the total cost of diagnosis and treatment over a five-year period, including the patient’s out-of-pocket portion, for roughly 35,000 commercially insured people with lung, breast or colorectal cancer. The results revealed that the average health care spending per patient increased from less than $2,000 in the month preceding diagnosis to as high as $25,000 in the month of diagnosis. The patient’s out-of-pocket responsibility similarly spiked dramatically, averaging $1,800 to $2,900 in the month of diagnosis alone.

The cumulative costs can be staggering. According to the Milliman report, total health care spending four years after diagnosis averaged $101,000 for breast cancer, $165,000 for colorectal cancer and $281,000 for lung cancer. The patient’s average out-of-pocket responsibility for that same time period totaled $7,531 for breast cancer, $8,442 for colorectal cancer and $11,180 for lung cancer. That does not include other major costs, such as insurance premiums and expenses associated with transportation, time off work and child care.

“Most of the time these costs are not covered by insurance, so it can be a downward spiral for many,” says Steven Hansen, managing director of Cancer Horizons, an organization that has one of the largest online directories of free products and services for patients with cancer nationwide. “I hear stories every day. People are trying to get better, but they’re also trying to deal with these fundamental lifestyle, cost-of-living-type issues.”

The patients tracked for the report had the benefit of employer-sponsored insurance, which negotiates a lower rate for the medical care provided, and then pays the lion’s share of treatment expenses. Even so, the added expenses associated with diagnosis and ongoing treatment, along with related costs for travel and lost wages, can be financially overwhelming. For those who lack insurance, are self-insured or need access to hospitals or treatments not covered by their insurance, the costs can be dramatically higher. Facing financial hardship can be demoralizing, but help is available, ranging from transportation to and from treatment to legal assistance to scarves and wigs for those who lose their hair due to chemotherapy.

Most assistance organizations require applicants to fill out online request forms. The amount of personal information asked for ranges broadly, but almost all require some proof that the applicant has cancer and is genuinely in need. Sometimes this may come via a Facebook page, but others require a letter from a physician.

People should not be deterred by the paperwork and take advantage of the goods and services available to patients and their caregivers, says Nancy Novack, founder and executive director of Nancy’s List, a nonprofit organization dedicated to assisting patients in need. “Such programs go a long way toward eliminating stress,” she says. “Participation increases the number of people who are on your side and gives you hope.”

Novack and Hansen both established their charitable organizations following a personal experience with cancer. For Novack, it was a successful fight against stage 4 ovarian cancer; for Hansen, it was months of caring for his father after a diagnosis of colon cancer. Both say after realizing the challenges faced by patients with cancer, they decided to fill an obvious need. “This is an extremely underserved market,” Hansen says. “Our sole mission is to provide com-passionate resources for patients with cancer. Everything is driven by the patients.”

Aside from the emotional and financial toll, cancer brings physical side effects, too — hair loss during chemotherapy; brittle nails; rough, flaky or discolored skin; sores and scars. Look Good Feel Better offers complimentary group, individual and online sessions that include lessons on skin care and cosmetics, nail care, wigs and turbans, accessories and styling to help men and women with cancer regain their self-esteem. To learn more, call the 24-hour hotline at 800-395-5665 or visit lookgoodfeelbetter.org. For men’s services, visit lookgoodfeelbetter.org/programs/men.

Having cancer doesn’t have to mean the end of having fun. Several organizations provide free experiences such as camping retreats and outdoor challenges that bring those battling cancer together with people who have gone through it.

Camp Good Days and Special Times provides free camp services for children who have cancer, have a parent or sibling with cancer, or lost a parent or sibling to cancer. Weekend adult retreats are also offered. To learn more, visit campgooddays.org.

Camp Mak-A-Dream is free to cancer survivors between ages 18 and 40. Campers can participate in activities like swimming, horseback riding, field sports, pottery, weaving and jewelry making. The camp also offers adult retreats. To learn more, call 406-549-5987 or visit campdream.org.

First Descents provides outdoor adventures of up to week, at no charge, for young adults aged 18 to 39 years affected by cancer. To learn more, call 303-945-2490, email info@firstdescents.org or visit firstdescents.org.

Project Koru brings the healing power of community and the outdoors for cancer survivors, who can participate in surfing, stand-up paddling, outrigger canoeing and snowboarding. To learn more, call 415-617-5678, email info@projectkoru.org or visit projectkoru.org.

The Hole in the Wall Gang Camp, founded by actor Paul Newman in 1988, was created to help seriously ill children celebrate fun and friendship for free. To learn more, visit holeinthewallgang.org.

Keeping family and friends updated on health can be overwhelming for patients. However, these resources try to make this job easier by keeping communication in one place.

CaringBridge lets patients post mass updates to everyone they choose to include in a private space; the organization provides emotional support, too. To learn more, call 651-789-2300 or visit caringbridge.org.

Lotsa Helping Hands simplifies the process of organizing help. Family and friends sign up to make meals, give rides to medical appointments, or stop by to say hello. To learn more, email info+contactus@lotsahelpinghands.com or visit lotsahelpinghands.com.

For many patients with cancer, as well as survivors, exercise such as yoga can benefit both body and mind. Certain fitness programs help alleviate physical side effects such as lymphedema, while others reduce stress and anxiety.

Cancer Support Community offers free fitness programs, cooking classes and nutrition lectures. To learn more, call 888-793-9355 or visit cancersupportcommunity.org/locations.

Livestrong at the YMCA offers free programs around the country. To learn more, call 855-220-7777 or visit livestrong.org/what-we-do/program/livestrong-at-the-ymca.

Yoga Bear provides a list of yoga studios around the country that offer free or reduced-cost classes to patients undergoing treatment. To learn more, visit yogabear.org.

The following organizations offer free headwear such as hats, scarves and wigs to patients who experience hair loss, a common side effect of chemotherapy.

• The Breast Friends Hat Project: Call 888-386-8048 or visit breastfriends.org. • EBeauty Community: Email alex@ebeauty.com or visit ebeauty.com. • Friends Are By Your Side: Call 856-582-6600, email wigs@fabys.org or visit friendsarebyyourside.com. • Good Wishes: Call 888-778-5998, email info@ goodwishesscarves.org or visit goodwishesscarves.org. • Heavenly Hats Foundation: Call 920-362-2668 or visit heavenlyhats.org. • Lolly’s Locks, call 240-428-1984: Email info@lollyslocks.org or visit lollyslocks.org.

Some local affiliates of Susan G. Komen distribute free wigs. Call your local chapter to see if they offer wigs in your area.

Patients undergoing active treatment likely will not have the strength or feel up to doing household chores and cleaning. That’s where Cleaning For A Reason comes in. Created in 2006, the nonprofit organization works with maid services throughout the United States and Canada to offer free housecleaning. To learn more, call 877-337-3348, email info@cleaningforareason.org or visit cleaningforareason.org.

Patients with cancer often find themselves at odds with insurers or face other disputes over access to coverage or benefits. This process of appeal can be daunting and stressful, but Cancer Legal Resource Center offers free information that may help. To learn more, call 866-843-2572, email CLRC@drlcenter.org or visit cancerlegalresources.org.

Treatment for cancer is stressful enough, but arranging and affording transportation to and from a hospital or cancer center can be trying, too. Sometimes treatment must be received at a care facility many miles away or in another state, a situation that can cause significant financial hard-ship. The following are some of the organizations that offer free ground or air transportation for patients.

The Air Care Alliance allows patients in need to reach out to all the charitable organizations offering free air transportation at once or specific member organizations. To learn more, call 888-260-9707, email mail@aircarealliance.org or visit aircar-ealliance.org.

The groups listed below can help, as well.

• AeroAngel: Call 303-817-7355, email mark@aeroangel.org or visit aeroangel.org. • Children’s Flight of Hope: Call 919-466-8593, email info@cfoh.org or visit childrensflightofhope.org. • Corporate Angel Network: Call 914-328-1313, email info@corpangelnetwork.org or visit corpangelnetwork.org. • The American Cancer Society’s Road to Recovery: Call 800-227-2345 or visit cancer.org/treatment/support-programs-and-services/road-to-recovery.html. 

Features

Organizations offer free services and goods for patients with cancer. 

Help Doesn't Cost a Thing

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.”

Side Note

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

 serves military families who need a place to stay while a loved one is receiving medical treatment. The service is offered at no cost. To learn more, call 888-294-8560 or 301-294-8560, email info@fisherhouse.org or visit 

provides assistance to patients, including travel and lodging. To find out if you’re eligible, call 877-968-7233, email info@mygooddays.org or visit 

mygooddays.org/for-patients/patient-assistance

 partners with many hotels and other lodging accommodations across the country to help patients and their families find a place to stay while traveling for treatments. Patients can receive discounted rates for rooms. Although the nonprofit organization was created to help those with cancer, any patient may use the lodging facilities. To learn more, call 877-563-7468, email info@joeshouse.org or visit 

 offer free or reduced-cost lodging (a requested donation of up to $25 per day) for families of seriously ill children who are receiving treatment at nearby hospitals. The homes provide home-cooked meals, private bedrooms and playrooms for children. To learn more, call 630-623-7048, email info@rmhc.org or visit 

Organizations That Can Help You Rest Easier

For many people with cancer, getting the best care means getting to a large city. A major barrier to this: the cost of travel. Although health insurance usually covers the costs associated with the care itself, each patient foots the bill for gas, flights, lodging and food.

Average cost of one night in a U.S. hotel room: $120.72. Factor in dining out and transportation and the price tag can be overwhelming, especially for patients who face months of treatment. The reality of traveling for cancer care may make them think twice, no matter how highly recommended the treatment.

Some hotels offer medical-stay discounts to help ease the burden, but despite the lower rates, patients may have a difficult time paying the bills. Amie Sanders, a stay-at-home mom who has breast cancer, underwent treatment at Roper Hospital in Charleston, South Carolina, a two-hour drive from her home in Barnwell. She used a medical discount of $120 per night the first two times she stayed in Charleston, where the average nightly cost of a hotel room runs from about $150 to $300-plus.

“After that, we had pretty much blown all the money we had,” Sanders says. Searching for affordable options so she could continue treatment led her and her husband, Gibby, to Hotel Keys of Hope.

Hotel Keys of Hope offers patients with cancer deeply discounted or free hotel rooms close to the treatment center where they will receive care. Extended Stay America created the program in 2013 to support the American Cancer Society’s (ACS) Hope Lodge program. More than 30 Hope Lodges throughout the country provide free accommodations for patients but have a limited number of rooms. That is where Hotel Keys of Hope steps in.

“One of the options that has dramatically increased the number of solutions we’re able to provide is the Hotel Keys of Hope program and our partnership with Extended Stay America,” says Richard Wender, M.D., chief cancer control officer of the ACS.

Extended Stay America has a tiered fee structure based on patient need. Someone who can afford a modest fee will get a 25 percent discount. If that amount is tight, they can get a room for $19. If that is still too much, they are offered rooms for free.

“The key to surviving cancer is getting access to treatment,” says Terry Atkins, vice president of marketing communications at Extended Stay America. “Probably one of the biggest barriers to getting access to treatment is the cost associated with it. You find people who are already potentially financially insecure, and then they may have lost their job because of the illness, can’t work or whatever the case may be. They’re in a really dire situation.”

Shane Caldwell understands this well. He lives in Columbia, South Carolina, and frequently travels the 230 miles to Duke University Cancer Center in Durham, North Carolina, for lung cancer treatment. He and his wife, Renay, appreciate the choices in the tiered system.

“We made the decision not to accept the room for free because we feel there is always someone else who needs that rate more than we do, but we do appreciate the significantly reduced rate,” says Renay. “Our rate is $19 per night, and that’s what we’re comfortable with.”

Extended Stay America, which has properties in 44 states, welcomes children under age 18 who are accompanied by an adult. The hotels are pet-friendly, too. “A lot of people find comfort in bringing their dog or cat,” Atkins says.

The rooms offer basic kitchen facilities — a fridge, microwave, dishwasher, small appliances and kitchen necessities. This amenity allowed Sanders to bring her two children, who were 6 and 8 years old when she started treatment, and was especially appreciated because her son has food allergies. “Eating breakfast out is very tricky. He is allergic to wheat, eggs and oats &mdash; pretty much all of your traditional breakfast foods &mdash; so it was nice to be able to take a gallon of milk and a box of cereal or have little things for them to eat,” she says. “My husband is diabetic, so keeping sugar-free drinks and bottles of water &mdash; those are big deals for us.”

Having a kitchen is also important for patients who have low tolerance for the smells of certain foods — a side effect of some cancer treatments that can make restaurant outings challenging, says Pam Daniels, whose husband, Jerry, traveled to Emory University in Atlanta to undergo treatment for diffuse large B-cell lymphoma and non-Hodgkin lymphoma. “You can make what you know doesn’t make the person sick and doesn’t have an odor that is irritating to them. It’s so easy to get malnourished at this time,” she says.

Patients and their families also can save money by making meals in the room rather than dining out for every meal. That becomes especially important for patients whose stay time lasts as long as several months.

William Sampson took advantage of the program while undergoing 30-plus treatments for prostate cancer at the Radiotherapy Cancer Institute in Duluth, Georgia, staying Monday through Friday each time. “They took good care of me,” he recalls. “Whatever I asked for, they accommodated me, and staying there took the burden off me and my family. It helped a lot.” Sanders quickly learned that having three specialists on your team can create a challenging schedule. Her plastic surgeon could see her only on Tuesdays or Thursday; her breast surgeon was available only on Wednesdays and Fridays; and her oncologist, on Thursdays or Fridays.

“It takes a good tank of gas to get to Charleston and back, so it was such a help to be able to go there and stay,” Sanders says. “It really did make a difference when we began to stay over. The first time we stayed, the nurses said, ‘Oh, my gosh, your blood pressure is so much better this morning. What’s the difference?’ It was that we didn’t just drive for two hours in horrible Charleston traffic.”

Although Extended Stay America offers the hotel rooms, it does not administer the program. All registration is handled through the ACS’s National Cancer Information Center (800-227-2345). This central system eliminates the need for patients to call individual hotels to book rooms and, at the same time, vets patients to ensure their eligibility.

Eligible patients must have a permanent address, be traveling for a cancer-related medical appointment and be in need of lodging near their treatment center. They also must be able to take care of their personal needs or travel with a companion who can assist them.

According to the ACS, patients often learn about Hotel Keys of Hope through a health care professional, such as a nurse or social worker. They also can find details on Cancer.org.

The assistance goes beyond booking rooms. “There may be other ways we can help,” says Elaine Mathis, senior program manager at the ACS. “Our representatives will talk with them not only about lodging but [also about] other resources, such as transportation or cancer information.”

In 2017, Extended Stay America donated 10,000 free rooms, 10,000 rooms at $19 a night and 20,000 at a 25 percent discount. The program allowed thousands of people with cancer to get access to treatment and saved them close to $5.5 million dollars in hotel costs, according to Extended Stay America.

“This is a financial burden for anybody,” Daniels says. “When you add on top of that what you’re going through physically, anything like the Extended Stay that removes some or part of that and gives you a place to stay for a little longer time rather than just one night — that’s a big benefit to myself and any other patient with cancer.”

Sanders couldn’t agree more. “I would not have gotten the treatment I needed without that program — I really wouldn’t have,” she says. “We could not have made the same decisions. I would not be where I am at now.”

Hotel Keys of Hope offers patients discounted or free hotel rooms to ease travel for cancer care.

A Home Away From Home

When a hospital pharmacist told Terry Tuttle that his co-pay would be $3,000 a month, he thought his renal cell carcinoma might get him at last.

Surgery eliminated all trace of the disease when it first appeared in 2002. Radio frequency ablation did the same when the cancer came back on his remaining kidney in 2008. But Tuttle saw no hope of buying the Sutent (sunitinib) his doctor prescribed when the disease spread and appeared on his pancreas last year.

Then Pfizer offered to give him the drug for free.

“My doctor had sent me to Cancer Services a local (patient advocate), saying that if there was help to be found, they’d find it,” says Tuttle, a 73-year-old grandfather of two who lives in central North Carolina. “I filled out a couple forms, gave them a copy of my tax returns, and they started looking. The whole process took 30 or 40 minutes. About a week later, I got the call from Pfizer.

”Tuttle has been receiving Sutent for nearly 18 months and appears to be responding. His most recent scan showed the tumor to be just half its original size.

The gift reversed Tuttle’s negative view of big health care companies, formed when his insurer’s refusal to pay for ablation nearly bankrupted him. Now he has more time to do the things he loves best. “I meet up with a few of my friends every day at the local McDonald’s for some coffee and conversation,” says Tuttle, who also looks after the houses of three infirm neighbors. “I’ve gotten very into framing and matting pictures over the past couple years, but my main joy is spending time with my family, which I do at least once a week and often more.”

Even though escalating medical costs that are increasingly being driven by rising costs of complex medications remains a big problem, there are ways to help some patients.

Finding Help After Nearly Losing Hope

Many pharmaceutical companies provide assistance for medications that patients desperately need.

The most basic facts about pharmaceutical-company financial assistance programs are also the most important facts: There is at least one program that covers a part or, in some cases, most of many cancer treatments. All those programs exist to make sure patients never forgo optimal treatments because they genuinely can’t afford them.

This is not to say that every pharmaceutical company offers assistance the moment drug costs begin to hurt. Some expect patients to dig pretty deep, particularly if those patients have savings. But there’s nearly always help available for patients who have reached the point of choosing between medication and other genuine necessities, and there’s often help available long before that.

The most common type of program provides discounted or free medications to patients with no insurance. Some of these programs are also open to people with very basic insurance that caps benefits or insurance that excludes a preferred drug from its formulary. Patients who wish to participate usually must document their lackluster insurance or swear they’re uninsured — sometimes in front of a notary &mdash; and then provide further documentation of their financial situation, usually via tax returns, and of their right to live in the country. In most cases, they must also get their doctors to document their medical condition and their treatment plan.

Maximum income thresholds vary from plan to plan and, sometimes, from drug to drug.

Historically, most programs are closed to patients whose household income is more than double the official federal poverty level, which is currently set at $16,240 for a two-per-son household and $24,600 for a four-person household. As drugs have gotten more expensive, however, many pharmaceutical companies have raised income caps. Pfizer made news in 2015 when it doubled income caps for its patient assistance programs to four times the federal poverty level.

Thresholds are even higher at Pfizer and many other companies when it comes to help with expensive oncology medications. For example, the current Lilly Cares Oncology income threshold for a family of four is $123,000 in the mainland United States, which is five times the federal poverty level, and it’s $141,450 in Hawaii and $153,750 in Alaska.

Still others have income levels that vary with the cost of the medication that patients need. The AbbVie Patient Assistance Foundation currently caps eligibility for uninsured patients from a four-person household at anywhere from $49,200 for its least expensive medications to $123,000 for its most expensive medications.

Incyte, the company that produces Jakafi (ruxolitinib), offers free medication through its IncyteCARES pro-gram. Patients may be eligible if their household size and annual income meet certain criteria, such as earning less than $125,000 a year or less than 600 percent of the federal poverty level.

Of course, patient income is not the only financial consideration. Many programs also have caps on patient wealth, so people who have retired early with millions in the bank typically don’t qualify for any help, even if their tax returns show next to no income. On the other hand, some companies will help patients whose income exceeds caps in very special circumstances: e.g., two members of the same family undergoing cancer treatment at the same time.

People who earn too little money are also ineligible for these programs because they qualify for Medicaid. There are, however, some programs from some companies that provide co-pay assistance to Medicaid patients.

Minimum income thresholds tend to vary with patient location because different states have different income limits for Medicaid. Minimums therefore tend to start at zero for patients in the 18 states that do not offer Medicaid to childless adults, and they rise to more than 138 percent of the current year’s federal poverty level in the 32 states that have recently expanded Medicaid eligibility as part of the Affordable Care Act. Patients can apply for most pro-grams through the mail, via fax or online, using scanned documents to verify important facts, and the approval process tends to be surprisingly fast given the value of the products in question.

“The process can be delayed if patients or doctors don’t initially provide all the documentation required, but we do what it takes to process complete applications quickly,” says Steven Stapleton, president of the Lilly Cares Foundation. “We know full well that the last thing recently diagnosed patients with cancer need is the stress of not knowing whether they’ll be able to follow their treatment plans. We typically respond to patients in three to five business days, and we approve all eligible patients. We don’t cap the number of participants or the value of donated medications. If you met all eligibility requirements, Lilly Cares will provide free medication."

Patients who have prescription drug benefits but still cannot afford treatment because of high co-pays can

Many pharmaceutical companies offer co-pay assistance to insured patients, usually through a program that is separate from the program that helps uninsured patients. All insured patients, even those with generous policies, should check to see whether they qualify for any such program because the savings can be substantial.

The process for applying for co-pay assistance is broadly similar to the process for applying for free medications, but there are some important differences. Maximum income thresholds are generally significantly lower because even the highest co-pays are significantly less than the full cost of prescription benefits. Also, many such programs are not available to Medicare patients. That said, Medicare patients should always check because some co-pay assistance programs are open to them. What’s more, some companies that ban Medicare patients from their normal co-pay programs have special programs just for such patients. AstraZeneca, for example, has the AZ&Me Prescription Savings Program for people with Medicare Part D.

To get a sense of how valuable co-pay assistance can be, consider what Merck & Co. offers as part of its Access Program for Keytruda (pembrolizumab), an immuno-therapy that retails for about $150,000 a year. The pro-gram pays a maximum financial benefit of up to $10,000 in annual co-pays for patients making more than seven times the federal poverty level and up to $25,000 in annual co-pays for patients who make up to seven times the current poverty level.

“We knew early on that Keytruda was a very special drug, but we also knew that the costs associated with developing it and making it risked ensuring many people had access to it, so we enhanced and launched an access program for Keytruda on the very same day that we brought Keytruda to market,” says Jill DeSimone, senior vice president, who heads Merck’s U.S. oncology business. “We fully under-stand that the best drug in the world is not effective if patients cannot access it, and we are fully committed to making sure patients can access our medications.”

Odd as it may sound, direct financial assistance is not the only form of financial assistance that pharmaceutical companies offer to patients with cancer. Many of them give patients access to counselors who specialize in finding money from other sources. These counselors are experts in making appeals when insurers decline to cover prescribed treatments, in finding insurance pro-grams that are open to uninsured patients who have just been diagnosed, in finding assistance from government programs and private charities or in hunting down other possible sources of extra funding.

Pfizer, for example, has just launched a program that offers patients with cancer who use one of its medications a dedicated social worker who can help them navigate the complexities of dealing with their insurance companies, their various doctors and even Pfizer’s assistance plans.

“We launched this in part because our research found a real need,” says Liz Barrett, global president of Pfizer Oncology. “Both cancer and its treatment are so all-encompassing that patients and their families often do not have the time or energy to read all the fine print and serve as effective advocates for themselves.” Barrett notes that a social worker is just one part of the company’s brand-new assistance program for patients.

“Like a lot of pharmaceutical companies, we used to have a bunch of different assistance programs, and both patients and doctors struggled to figure out who was eligible for what, even after we put an umbrella program on top of everything else,” she says. “The new program, Pfizer Oncology Together, eliminates all the complexity. There’s now one place to go for help with any question: how to navigate the health care system, how to get a second opinion, how many ways there are to pay, how to get tested for all the different genetic mutations, how to manage side effects, when they should call the doctor, or just what to expect.”

Patient support from many pharmaceutical companies goes far beyond finding money for particular medications. Companies maintain numbers that let patients call nurses to discuss the best way of dealing with the side effects of a particular treatment. They keep lists of cancer support groups in every part of the country. They help patients get discounted flights and lodging when they need to travel for treatment. Pfizer even spent the better part of two years developing a comprehensive support app that’s now avail-able free to all patients with cancer — online (thisislivingwithcancer.com/) and in both Apple and Google’s app stores as LivingWith &mdash; because Barrett and her team were under-whelmed with the usefulness of older support programs.

Similar support services are also available from a growing number of oncology practices and cancer centers, which have added financial counselors, patient navigators and 24/7 telephone nursing as part of a new care model designed to keep patients out of hospitals by giving them more care and more assistance while they’re still healthy.

Patients whose oncologists have adopted this new model should automatically be put in contact with a counselor who will look at both their prescribed treatment and their insurance plan and then set about finding any financial assistance those patients can receive, whether the money comes from a pharmaceutical company or some other source.

Patients whose oncologists don’t have such counselors must start looking for help on their own. They can, of course, start at the websites of whatever companies make the drug they’re prescribed, but it may be easier for many to start at one of the websites that aggregates information about programs from different companies. The largest of these is probably the Partnership for Prescription Assistance (PPA), which is run by a drug company trade group called the Pharmaceutical Research and Manufacturers of America, or PhRMA.

The PPA website (pparx.org/) can determine which patients are eligible to participate in any of more than 475 different assistance programs. (Yes, there really are nearly 500 separate programs, which is why it can be hard for unassisted patients to find the right ones.) Users start by typing in the name of each drug they want assistance in buying, and the site walks them through the process from there.

How many patients get approved? Pharmaceutical assistance programs don’t come up all that frequently in stories about drug costs and coverage, but they do reach a lot of people. The PhRMA website has helped more than 10 mil-lion patients get financial help since it went online in 2005, and the numbers that the drug companies put out suggest that’s only a tiny fraction of the total number of participating patients. Lilly Cares, which is one of those nearly 500 programs, helped 945,629 patients obtain medications over the past five years.

Numbers like that bring the story right back where it began: There is a lot of financial help that’s available. If you or a loved one needs help, it’s worth your while to look for it.

A Chest of Charity

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

CANCER IS TERRIFYING AT any age. But now imagine coupling fears about the illness and its costs with pay-ing for college, starting a career or buying a first house. Patients in those situations may be about to start their life in debt before getting on their feet.

Each year more than 70,000 adolescents and young adults (AYAs) aged 15 through 39 years are diagnosed with cancer, the leading cause of disease-related death among this age group. As of 2012, more than 600,000 AYA patients and survivors were living in the United States.

Faced with unique challenges, AYAs can quickly find themselves in bankruptcy. Fortunately, a few organizations are dedicated to providing them with support, as well as educating the members of the medical community about the specific needs of AYA patients.A

UNIQUE POPULATION Understanding these challenges firsthand, Samantha Eisenstein Watson, 39, a cancer survivor, founded The Samfund in 2003 to provide financial support to AYA patients. For them, the biggest problem is not having enough money to pay their bills, according to Watson.

“That’s true for a lot of people going through cancer,” she says, “but what’s unique to young adults is that they don’t have a lot of financial stability to begin with.” Although that can be an issue for any patient at any time of life, it tends to affect AYAs more extensively and simultaneously.

For instance, a 2012 Livestrong study found that most AYAs with cancer needed to adjust their work life by tak-ing time off, switching to part-time hours or finding less demanding work or a more flexible schedule. Most returned to school or work within 35 months.

Medical insurance is another major concern. At 26, adult children are no longer covered by their parents’ plans. This group is at greatest risk of being uninsured. The Affordable Care Act helped remedy that situation, but many AYAs choose plans with low premiums. Then, when diagnosis strikes, they find themselves with high co-pays and deductibles that can make care inaccessible.

AYAs may have trouble keep-ing up with rent or mortgage payments, transportation to and from treatment, child care costs and follow-up screenings.

Psychosocial factors play a role, too. AYAs aren’t kids, but many don’t have the stability that comes with adulthood. They need special therapy and support groups designed to address emo-tions, self-esteem, body image, future plans, peer relations and health behaviors.

In addition, those who may want to have children face fertility issues. Because certain treatments can lead to infertility, most AYA patients may want to consider fertility preservation before treatment. For men, banking sperm can cost from $1,000 to $1,500, with annual storage fees ranging from $200 to $400. For women, the national average cost of embryo preservation is $12,400, with storage about $300 a year. Medical insurance may cover some methods but not those considered optional. THE HARSH

FINANCIAL REALITY For years, Kate Yglesias Houghton, 33, and her husband had saved every penny and finally bought their first house in February 2012. In March, she was diagnosed with acute myeloid leukemia. Cost of treatment: $450,000. Cost of the house: $405,000. “If I hadn’t had good insurance, we would have had to give up our house,” says Houghton, the presi-dent and CEO of Critical Mass: The Young Adult Cancer Alliance, a national advocacy organization.

Watson, a survivor of Ewing’s sarcoma, a type of bone cancer, and secondary myelodysplastic syndrome, nar-rowly avoided financial disaster when, at 23, she was billed $275,000 for a bone marrow transplant. Her mother quit her job and spent two years fighting the claim, which they ultimately won.

Similar stories are common in the AYA community, but many don’t have the positive outcomes. AYAs with cancer are more than $100,000 behind their peers in average net worth, according to 2007 to 2013 grant recipient data col-lected by The Samfund and compared with U.S. Census Bureau data. “The reality is that these are people who are struggling profoundly,” Watson says. “That $100,000 gap is hard to close for anybody, but especially if you’re in your 20s or 30s. It’s impossible.”

For some, it means bankruptcy. Researchers at the Fred Hutchinson Cancer Center in Seattle found that adults with cancer filed for bankruptcy 2.6 times more often than age-matched peers without cancer, and young patients with cancer filed at up to 5 times the rate of those diag-nosed at 65 or older.

Financial burdens are not helped by the fact that there’s no federal or state support for a “healthy” young adult who gets sick according to Houghton, but other steps can be taken. For example, because active cancer treatment is not currently considered a reason to defer student loan payments, The Samfund and Critical Mass partnered to introduce the Deferment for Active Cancer Treatment Act in the U.S. House of Representatives. If signed into law, this bill will allow patients with cancer to pause interest from accruing on loans while they seek lifesaving care.

The harsh reality for AYAs is not only financial but also health related. According to Damon Reed, M.D., who leads the AYA program at Moffitt Cancer Center in Florida, this group has not seen the improvement in cancer survival rates observed in older and younger patients. “What’s really shocking is that if you’re a 30-year-old and you have a can-cer that’s more common in 60-year-olds, you do worse than them,” Reed says. “The same holds true if you’re a 30-year-old and have a cancer that’s more common in 10-year-olds.”

Not much research focuses on this group and the fact that cancer “doesn’t just passively get better,” Reed says. The medical community is just beginning to realize that AYAs are a unique population and need their own treat-ment, resources and advocates.

WHO’S HERE TO HELP So, how can AYAs with cancer get much-needed help? Organizations across the country provide funds, while oth-ers offer grants to patients who have a particular diagnosis or receive a specific medication or treatment. Here’s a sam-pling of some of the bigger organizations.

Critical Mass: The Young Adult Cancer Alliance can be reached by calling 512-553-3556, emailing hq@criticalm-ass.org or visiting criticalmass.org.

Family Reach, a national nonprofit organization, accepts applications on a rolling basis and offers grants to children, including adolescents. To learn more, email info@familyreach.org or visit familyreach.org.

Hope for Young Adults with Cancer, another national nonprofit organization, offers financial assistance to patients and survivors between 18 and 40. To learn more, email info@hope4yawc.org or visit hope4yawc.org.

Stupid Cancer offers opportunities for young survivors to meet one another, as well as resourc-es to help with financial assistance, insurance and fertility options. To learn more, email contact@stupid-cancer.org or visit stupidcancer.org.

The Allyson Whitney Foundation offers Life Interrupted Grants for young patients with rare forms of cancer. They accept applications twice a year, and the average grant is $1,100 to $1,500. To learn more, email info@allysonwhitney.org or visit allysonwhitney.org.

The Samfund offers grants to AYAs with cancer. They have two appli-cation periods every year and give about 100 grants of, on average, $1,500 to $2,000 each. Reach the organization by calling 617-938-3484 or visiting thesamfund.org.

The Ulman Cancer Fund for Young Adults provides col-lege scholarships, making 36 awards of $2,500 each in 2016. The fund also takes a unique approach to helping AYAs. To tackle the housing problem, it acquired six row houses in East Baltimore near Johns Hopkins University and is build-ing a 12,000-square-foot facility with nine patient and fam-ily suites that can accommodate 300 people per year. To find out more, call 888-393- 3863, email info@ulmanfund.org or visiting ulmanfund.org.

Many cancer centers nationwide also have developed AYA-focused facilities and services. For instance, Dana-Farber Cancer Institute in Boston created the Young Adult Program, which offers counseling and support services, an online community and an annual conference for young adults and their caregivers. Memorial Sloan Kettering Cancer Center in New York City provides The Lounge, a place for teens to hang out; a social media platform; and the Peer-2-Peer Network, a program that matches patients with teens who have completed treatment.

At the Moffitt Cancer Center, the AYA program includes psychoso-cial care, as well as donor funds set aside to provide free fertility preservation for male patients who qualify. “We never want a patient here to not have children in the future because of $300,” Reed says. Moffitt hopes to grow the program to help women with fertility preservation, too, but is limited now due to funding.

At MD Anderson Cancer Center in Texas, Cancer 180 supports patients between ages 18 and 30 with a special recreation area that includes a pool table and jukebox. The program also hosts social events such as bowling, pottery making and cooking classes.

The School Program at City of Hope in California helps young patients continue their education by coordinating tutors and home instruction, and assisting with school reentry, advocacy and community resources

Adolescents and young adults need not face cancer’s financial burden alone.

Financial Assistance | CURE