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One morning in June 2009, Stephen Jefferson noticed that he couldn’t tie his shoes. His right foot and leg were swollen. He went straight to his cardiologist, who had very few answers and only one remedy: fluid pills. “The doctor told me that if it doesn’t get any better that I should go to the emergency room.” By Saturday the swelling hadn’t gone down, and after a painful shoe shopping trip with his son, Jefferson headed to Providence Hospital. “My doctor ordered a series of CAT scans. The nurse came back later and said I had fluid around my heart, a collapsed lung, a tumor in my belly the size of a melon, and a blood clot traveling up my leg. Before I knew it, they had to rush me upstairs to a room. I was admitted on June 13th,” he recalls.
The tests showed that Jefferson had stage four Hodgkin lymphoma.
After surgery and a three-week stint in the hospital, he was released just after the Fourth of July holiday. Jefferson would have to complete three months of chemotherapy, a routine that left him angry at times. “I would have to go from 29th Street in Southeast to Providence Hospital for treatment twice a month. I knew I had to keep going—if for no one else, for my son. But then I would get angry because I started thinking, ‘Why do I have to travel so far away from home to get treatment?’”
He took his resentment to the office of then-D.C. Councilmember David Catania, who was the chair of the Committee on Health at the time. “I went in there and my exact words were, ‘How come you let niggas die? We get cancer, we got to travel 30 to 45 minutes to get treatment. White folks and people in the middle of the city can get there in 10 minutes.’” One of Catania’s staffers connected Jefferson with a recently formed advocacy group focused on eliminating disparities in cancer care among District residents, the DC Cancer Consortium.
Jefferson, a former account manager for Canada Dry, met a woman named Susan Lowell Butler, whom he describes as feisty. “I was always talking about how the city didn’t have things for black folks east of the river as far as cancer treatment and oncology services. The next thing I knew they were saying that they wanted me to bring information to people east of the river. I’m a little unpolished. A little rough around the edges. I was like, ‘I dunno if you want me,’” chuckles Jefferson.
But it worked. And for many years the DC Cancer Consortium was the city’s leader in cancer education, prevention, and treatment. They were the trusted resource that created the city’s master plan for eradicating cancer. But when ideals clashed and the funding well ran dry, the consortium left a consolidated force in fractured pieces.
The DC Cancer Consortium was created in 1990 and spearheaded by Butler, a fearless leader who was a breast and ovarian cancer survivor. The consortium had more than 70 organizational and individual members and seven board members. It distributed more than $11 million in grants to local cancer organizations, and its mission was “to harness the power of collaboration in reducing cancer deaths.”
Its guiding document was the cancer control plan, which contained statistics and goals for reducing cancer deaths in the District. The Consortium created the first plan in 2005, and wrote a total of three plans over the years. Each consecutive plan covered five years and explained in extreme detail the scope of the problem, the goals, objectives, and the key players in the city who would assist in its implementation.
These plans spotlight the barriers and disparities in cancer care and treatment. They break down select cancers that disproportionately affect subgroups and identify how the city and its health facilities can address problems. Finally, the control plan offers a preliminary budget assigning dollar amounts to education, prevention, surveillance, and outreach. There have been two plans generated over the last eight years, 2011–2016 and 2013–2018.
Before losing her personal battle with cancer in 2010, Butler began grooming YaVonne Boyd to be her successor and carry on the mission of the Cancer Consortium. “Susan Butler, who was the original executive director when the cancer control plan was written, at that point contacted me to come help with the programs they had going. The group came together and wrote the cancer control plan for the District,” Boyd recalls. She says that the group was able to secure $20 million from The Master Settlement Agreement, a 1998 lawsuit settlement reached between the nation’s four largest tobacco companies and attorneys general from 46 states and the District of Columbia concerning the advertising, marketing, and promotion of cigarettes.
With funding and a plan in place, the Consortium was off to a strong start. By 2012, Boyd had already moved into her role as executive director and its efforts began to ramp up. The Consortium started initiatives such as DC Goes Pink for breast cancer and LATINO (Let’s Act Together in New Opportunities), which it designed to increase awareness of cancer among the District’s Hispanic population. There were blogs, media coverage, public service announcements, and fundraisers. DCCC became a prominent advocacy group on the frontlines against a treacherous public health threat.
One of the ways the Consortium made an impact was through its patient navigation services. DCCC partnered with The George Washington University Cancer Institute (now known as The Institute for Patient-Centered Initiatives and Health Equity) to form the Citywide Patient Navigation Network (CPNN). Newly diagnosed patients could consult with DCCC navigators to get assistance with finding treatment options, transportation, making appointments, and emotional support. Patient navigation programs have been shown to increase access to cancer care for patients in underserved areas and provide culturally sensitive support.
Patient navigation services were a core program for DCCC. But when the consortium collapsed, so did CPNN. Patient navigation services are in high demand, but poorly funded.
Mandi Pratt-Chapman, Associate Center Director of Patient-Centered Initiatives and Health Equity at George Washington University Cancer Center, has authored and co-authored several academic studies about patient navigation services.
“Navigation has been shown to reduce costs, emergency room visits, hospitalization, costs to patients, and increase adherence,” she says. “We haven’t been able to figure out how to pay for patient navigation. And so whether it’s at the city level or insurance level or through reimbursement strategies, my hope is that we get a payment model that has an additional payment built in for navigation. We really need that in D.C.”
It’s difficult to get information on how many people in D.C. have cancer, and where in the city they live. The last count from DC Health (then called the Department of Health) was done in 2012. Without current numbers, it’s impossible to measure whether the city is reaching its goals and dismantling barriers to care as detailed in the control plan.
The 2012 numbers revealed that there are inequities all over the District in cancer rates and care. The top four cancers among D.C. residents at the time were breast, prostate, lung, and colorectal. Prostate cancer hits black men hard in the District. Black men had an incidence rate and death rate that is two times higher than other groups.
Breast cancer affects black women at high rates. While white women are more likely to be diagnosed with breast cancer in D.C., black women are more likely to die from it. Pratt-Chapman says the burden is disproportionately on black women likely because of stress and late-stage diagnoses. “My understanding is that black women are more likely to prioritize other people’s needs before theirs. I think part of it is the responsibilities and chronic stress disproportionately placed on African American women. Also, in areas where larger black clusters are in D.C., people have to travel further for treatment. In terms of diagnosis, women may have family members or friends that were diagnosed at a later stage and had poor health outcomes and so they may be scared and feel that if they go to the hospital they won’t come out.”
Another possible reason for delaying diagnosis is deciding where to get treatment. Until recently there has only been one place in the southeastern end of the city where cancer patients could go to receive care—and that care didn’t include on-site chemotherapy. The cancer care clinic at United Medical Center operated with one oncologist and one oncology nurse practitioner and provided screenings, diagnostic care, treatment planning, post-treatment follow-up care, and patient navigation. But the clinic closed at the end of June.
Sometimes it’s not the type of care but rather the type of insurance that determines where patients will receive treatment. In the RAND Monitoring Cancer Outcomes Across the Continuum report from 2012, there was a specific notation about Medicaid and oncology services. The report stated that most hospitals in the D.C. area offer some but not all cancer services for patients with Medicaid Fee-For-Service (FFS), a plan where states pay providers directly for each service covered by Medicaid. In the past, only two hospitals provided services to patients with Medicaid FFS, Medicaid Managed Care Organization (a system that provides health benefits through contracted arrangements), and Alliance (coverage for low income residents who do not qualify for Medicaid or Medicare): Providence Hospital and Howard University Hospital. Today only the latter remains, and public health insurance acceptance varies from hospital to hospital.
The last written cancer control plan for the District expired last year. DC Health tells City Paper they are currently working on the 2019-2023 plan, and that rollout of the yet-to-be-completed plan is tentatively scheduled for late summer 2019—or next month. DC Health claims that the new cancer plan will include updates on progress in meeting the previous plan’s goals and objectives, as well as current local cancer rates (screening, incidence, mortality) and new reduction targets.
It was the settlement money that enabled the DC Cancer Consortium to transform. “Initially [the Consortium] was a group of volunteers that came together that really wanted to make cancer a focus area in the District,” Boyd recollects. “Prior to them we only had Project WISH, which was the breast cancer screening program. But there were no other programs in the DOH that addressed cancer. So when the District funded the cancer control plan, that’s when they hired Susan Butler, who was a cancer survivor herself, to lead the efforts.”
In hindsight, Boyd says she didn’t see the signs on the wall that the consortium was heading toward financial insolvency. “At every board meeting they would say, ‘When is the money going to run out?’ And I guess I wasn’t processing that their intent was not really to go beyond the funding. So when I became the E.D. I wanted to bring in more programs and a different set of board members. Not to remove the current board but to have more community participation. But they would constantly say no. They were more like, ‘We’ve done this work and we put the plan in place. The District has invested in it.’ They really just wanted to do policy and advocacy work.”
The Consortium relied on the D.C. Council for funding because Butler had promised the board of directors that the Consortium would never compete with DCCC board members, many of whom represented nonprofit organizations, for grant money. Boyd’s hands were tied.
Between 2012 and 2013 the city had a budget shortfall and belts were being tightened. The consortium took a $3.5 million cut from their settlement money, leaving $16.5 million in their budget. Despite many efforts to raise funds to keep the consortium going, the DC Cancer Consortium filed for bankruptcy in February 2015.
David Castañeda Díaz was the last executive director. He recalls the disappointment he felt when he closed the books. “I wish we could have continued the work. Unfortunately the funding was just a one-time funding from the tobacco settlement. When the funding came to an end, pretty much everything came to an end.” Díaz says he transferred the remaining $2 million back to the Department of Health, and that was that. “I don’t believe there was any political motivation to continue to provide funding for the cancer plan in the District of Columbia. They should do it because the District has some of the highest cancer rates in the nation. And that’s a shame.”
Stephen Jefferson also felt let down by the closing of the consortium, an organization he had worked so hard to promote. “I felt a little hurt and betrayed because I felt that this was something that was really moving. It really had a positive impact on the community. Folks were coming up to me and saying, ‘I’m glad you’re really speaking on this.’ And then all of a sudden the bottom fell out.”
Some patient navigation services are available through specialty programs such as the breast and cervical cancer program Project WISH and DC Colorectal Cancer Control Program (DC3C). Howard University Hospital also offers support for prostate cancer with their Men Take Ten program.
As for a citywide, one-stop patient navigation home, it doesn’t exist. DC Health says patient navigators are accessed directly through a health care provider. “There are patient navigators in primary care, hospital and treatment center settings; managed care organizations also employ case managers to guide patients with complicated medical care needs. Patients should contact their provider to connect with a navigator,” explains Alison Reeves, a DC Health spokesperson.
A new cancer clinic is set to open within Unity Health’s Parkside location in Northeast D.C. The clinic is a result of a partnership formed between Unity Health Care and Sibley Memorial Hospital and offers cancer care and patient navigation services.
These days, the former DCCC staff members continue to lead in D.C. Boyd is the executive director of Community Wellness Alliance, an organization with a mission to improve health and wellness outcomes for D.C. residents. Díaz is Senior Managing Director at PARAGON Business Consultants.
As for Jefferson, he is now cancer free and conducts smoking cessation groups at United Medical Center in Southeast. His message to fellow survivors is to move on. “I celebrate survivors. You had cancer. You don’t have it anymore. Keep it moving. We are thrivers.”