Delivering Dignity

It is 1:30 on a Friday afternoon, and Lorna Khawaja is stuck in traffic on a Chicago freeway. She is on her way to visit a client, a woman who recently lost her husband to pancreatic cancer at the age of 63.

Ms. Khawaja, 44, founded and heads No Wooden Nickels, a nonprofit organization in nearby Evanston, Ill., whose mission is to provide assistance with living expenses to low-income cancer patients during their treatment. Ms. Khawaja tries to visit some of the people her charity helps, as time allows. But today, she is getting concerned: Traffic is moving at a snail’s pace, and the client she is supposed to meet must leave shortly to pick up a grandchild from school.

During the trip, she fields several calls, including one from the manager of a local grocery store, who wants to donate snacks for No Wooden Nickels’ men’s health fair. She also receives an update on a family emergency, involving a close relative who was recently hospitalized.

Although she has printed directions from a mapping Web site, Ms. Khawaja (the “K” is silent) calls the client to confirm her exit off the highway. The two greet each other warmly with a hug, though this is the first time they have met. The client immediately shows Ms. Khawaja a photograph of her late husband, as if to introduce them.

The two take seats on living-room couches, and Ms. Khawaja inquires about how her client is doing. The woman says she is better but points to several vases of flowers nearby and explains that she recently had a birthday. “It was so weird having a birthday without my husband,” she says. The couple had been married for 38 years.

This widow is one of about 75 clients that No Wooden Nickels has helped since it was founded in 2006, a job that is becoming more challenging as the economy sinks and the needs of the charity’s low-income clientele grow. Although Ms. Khawaja runs the organization on a shoestring — she and its other staff members are unpaid volunteers, and the organization’s headquarters is also its leader’s home — the charity’s fund raising has struggled this year to keep pace with the demands for its services.

‘Kind of Heartbreaking’

The client Ms. Khawaja is visiting today first contacted her about assistance in the spring. She was referred, as are many of No Wooden Nickels’ clients, by the cancer center where her husband was being treated.

He was a self-employed real-estate agent but was unable to work in the last year of his life because he was too ill. Colleagues chipped in to pay the couple’s health-insurance premiums for a time, but they were unable to continue. A foundation associated with the cancer center also helped, as did the couple’s son, who also must support his own wife and children.

The woman called Ms. Khawaja and submitted an application for help from No Wooden Nickels. Unfortunately, her husband died shortly thereafter, but the group agreed to pay the health-insurance premium for several months so that she would continue to be covered.

“It’s always tough talking with someone who’s lost someone,” says Ms. Khawaja. “That happens from time to time — the patient passes away in the middle of the application process, but we still try to help the family. In a lot of cases, they still need the help.”

Ms. Khawaja knows what it is like to lose a loved one to cancer. The disease took her father’s life in 2005, and shortly after, she had the idea to start No Wooden Nickels.

At the time, she was working as an executive assistant in the oncology department at a Chicago hospital. One of her responsibilities was to verify insurance coverage for patients trying to get on the bone-marrow transplant list. The calls often took nearly an hour. In most cases — about three out of every four, she says — she would get insurance companies to grant permission for treatment.

“It was kind of heartbreaking, the whole process of having to do that, of having to plead the case,” she says.

Although she didn’t work directly with patients, she would overhear their conversations — how they had trouble getting to and from treatment, how sick the chemotherapy made them, how, when they were finally hungry, they didn’t have enough money to go down to the hospital cafeteria to buy a bite to eat.

After working at the hospital, Ms. Khawaja did computer work for a small health-related nonprofit group, where she learned a lot about how such an organization operated. “That gave me the impetus,” she says. “I knew, this can be accomplished, this can be done.”

The name No Wooden Nickels is a bittersweet nod to her dad — who, she recalls, “was so full of life and always joking. When he’d leave your presence, he’d always say, ‘You take care of yourself, and don’t take any wooden nickels.’”

The memory makes her smile, she says, despite the gravity of the stories she hears each day.

Ms. Khawaja is not a therapist — she was a systems engineer for 18 years and still takes on freelance information-technology projects to support herself — but seems a natural, empathetic listener. When the client expresses concerns about her eventual need to return to the work force after having spent 33 years as a full-time homemaker, Ms. Khawaja reminds her how far she has come.

“You’re doing great,” the charity leader tells the woman. “I remember it was hard for you to even talk on the phone.”

It is time for the client to pick up her grandchild. As the two say goodbye, Ms. Khawaja reminds her she had shown interest in volunteering during one of their calls. The client says she needs more time but would still like to help.

Ms. Khawaja says clients sometimes ask about volunteering, or she will broach the subject: “It’s one of the ways they can try to help deal with the loss, to get busy.”

She says she is also hoping the woman will pick up some computer skills — perhaps learn how to use a laptop and send e-mail messages — to boost her confidence and odds of succeeding in the job market.

Tight Funds

There is less traffic on the return trip, and Ms. Khawaja makes a stop at the hospital to see her relative. It is after 3 o’clock in the afternoon, and she hasn’t had time for lunch. While walking and during the elevator ride, she eats some celery she had packed in her purse.

About 5 p.m., she arrives at her house. As she is getting out of her car, her cellphone rings. It’s a reporter from a public-radio affiliate interested in learning more about the group and its programs for a possible news story. Once settled in her office, Ms. Khawaja checks e-mail, eager to find vendor registrations for the men’s health fair, which is coming up in three weeks.

A little after 6 p.m. sees the arrival of Yolanda Starling, No Wooden Nickels’ vice president. The two plan to work on the agenda for tomorrow’s board meeting over dinner. Long days are the norm for Ms. Khawaja, who often works late into the evening.

The next morning, Ms. Khawaja arrives about 11:30 at a local inn, the site of the organization’s board meeting. She typically holds the meeting in free space at the library, but it wasn’t available.

She keeps close watch on the charity’s purse strings, she says, ever mindful that available money must go toward patient assistance. This is why she has not drawn a salary from the organization since it opened and doesn’t lease office space, she says.

With the charity’s fiscal year due to end December 31, she estimates that it has raised a little more than one-quarter of its $220,000 budget. The group received most of its donations from companies and foundations — and, to a lesser extent, individuals. It has received significantly less money so far this year than last, a dip she attributes to the economic conditions nationwide. She says she has heard similarly disappointing stories from and about other nonprofit groups, too.

The charity’s fund-raising woes are worrisome because they come at a time when, given the economic slump, the need for its services are especially great. The group receives patient referrals from physicians, hospitals, and cancer-treatment centers. When doctors and other medical-care officials in Illinois began talking to colleagues in other states, and the group was listed as a resource in an internal American Cancer Society database in the spring, No Wooden Nickels’ calls and Web site traffic — as well as applications for aid — spiked.

The group had decided it would designate 20 percent of its money to help out-of-state patients. When that money was exhausted in July, Ms. Khawaja posted a note on the charity’s Web site and updated the phone greeting. For now, assistance is available only to Illinois residents.

Ms. Khawaja hopes that will change soon. With the help of grant-proposal writers who donate their services, she is more aggressively seeking new sources of money. A new marketing director has volunteered to join the group, although she and a few other members of the group’s 12-member board are unable to make today’s meeting due to work schedules and sick children. As Ms. Khawaja explains to the four board members in attendance, she also plans to seek out more wealthy people to offer support in the coming months.

Meeting the budget would allow both her and Ms. Starling, who has also volunteered her time since the group’s founding, to draw a salary, hire part-time administrative help, and rent office space. The two envision someone to answer calls “live” (right now most get routed to a voice-mail system), and they would like to hire several social workers to process the incoming applications, which includes talking with patients by phone.

She also wants to a buy a van that will travel to offer prostate-cancer screening. Prevention, Ms. Khawaja says, is the best way to help people.

The nonmedical costs to households that include cancer patients are significant: When lost productivity is included, the indirect costs of cancer totaled more than $130-billion in 2007, according to the Centers for Disease Control and Prevention. Ms. Khawaja says her group does not help clients with housing payments — “they’re just bigger than we are,” she says — but would like to if donations grow.

Case by Case

Details of the men’s health fair occupy most of today’s board meeting. This is the third annual fair, and it will be held at the Chicago Urban League. Ms. Khawaja and the board have been busy getting sponsors and speakers, arranging advertising and supplies, and lining up several student physician assistants to collect blood samples, which will be screened for diabetes, cholesterol, and prostate cancer. She has made arrangements for an additional screening booth this year, so that the men in attendance don’t have to wait long. She doesn’t want anyone walking away without being tested.

The meeting wraps up a little after 1 p.m., after the board members make plans to meet in December, for a full day of planning for the coming year. Later, back in Ms. Khawaja’s home office, Ms. Khawaja and Ms. Starling open the mail and retrieve phone messages. Some applicants have called to check on the status of their cases, and first-time callers sum up their situations in a few seconds:

“I heard you give gas vouchers for going back and forth for cancer treatment.”

“I just started chemo, and I need help with utilities.”

“I’m calling for my son — he was diagnosed with Stage 4 colorectal cancer.”

Two new applications arrive in today’s mail; 19 sit on Ms. Khawaja’s desk, already in process. She tries to turn them around within two weeks, assuming they include all the necessary documentation. No Wooden Nickels requires a doctor’s letter confirming the diagnosis as well as copies of bills or discontinuation-of-service notices that support the client’s request, among other information.

“The financial stresses of serious illness are immense,” says Carolyn Skipper, a discharge planner at Rush University Medical Center, who has referred patients to No Wooden Nickels. Patients may not be able to work during their treatment, she says. And while some patients may have disability benefits through their employer, patients may need to wait several months for them to start — or even longer, if they are applying for Social Security disability.

She suspects the need for assistance will only increase because of the economy, with its rising unemployment and high fuel costs.

When determining whom to assist, Ms. Khawaja says she takes each application on a case-by-case basis. For instance, she is reviewing one from a young woman with brain cancer, who is traveling some 800 miles for treatment.

The woman’s paperwork shows about $2,000 per month in net income, meaning she may be making too much money to qualify for help, Ms. Khawaja says. Nor does the woman have children or others in her home for whom she is financially responsible.

But Ms. Khawaja considers that the woman may not have other resources to draw upon. As she typically does, she will call the potential client to talk further about her situation.

At the heart of her work, Ms. Khawaja says, is the drive to raise awareness of the challenges that patients face.

“Yes, the public knows or hears about how awful it is to deal with chemotherapy and radiation — things such as hair loss, weight loss, the nausea,” she says. “But indirect expenses can be a deal breaker when it comes to fighting cancer with dignity. Imagine, if you would, dealing with all of the effects of treatment and then having to go home — if you’re able to maintain rent or mortgage payments — and live in a cold house because you can’t pay for the gas. Or lights. Or not be able to get transportation to the facility to receive treatment. Not a good position to be in.”