African Cancer Patient Navigator Program
Organized by: Beth Caldwell
We need your help! In December, I attended the San Antonio Breast Cancer Symposium, a large international meeting of researchers, clinicians, patients, and advocates, and I had the honor to meet Caleb Egwuenu at a tweetup there. Caleb is a cancer advocate from Nigeria, and what he told me about breast cancer care in Nigeria horrified me. Caleb explained that in Nigeria, people who are diagnosed with breast cancer often must wait an entire year before they can begin receiving treatment, because of sheer lack of resources. And of course, after a year has gone by, most patients' cancer has already metastasized and become terminal. At that point, they usually have a mastectomy--which is not the standard of care in the US because the evidence that it improves survival is limited at best, and it opens up patients to surgical complications, including lymphedema. Now, in the US, people who develop lymphedema usually receive physical therapy, instruction on how to do massage to reduce their lymphedema, and wear lymphedema sleeves and/or gauntlets to help keep their lymphedema in check. Here in the US, it's a treatable condition, but in Nigeria, none of these treatments are available, and thus people who develop lymphedema following a mastectomy often have their arms amputated because there is no other way to relieve the pain and dangerous swelling caused by their lymphedema. Many patients die from complications of lymphedema and amputation surgery. As you can imagine, it's also extremely difficult for patients to navigate the cancer care system in Nigeria. Patients often must borrow money to receive treatment, which leaves them unable to pay for lodging near the very few treatment centers in the country. People routinely sleep on the roadside or on the floor of hospital hallways, all the while suffering from the side effects of radiation treatments. All of this is horrifying. No person should have to wait a year for cancer treatment. No one should die of lymphedema. As soon as Caleb told me about this, I asked, "How can I help?" Luckily, Caleb has a plan. He's developed a proposal for a patient navigation program that will teach patients how to perform lymphedema massage, and help them get to treatment and navigate the cancer treatment system in Nigeria. His proposal is to pilot the program for a year. When I heard about his plan, I thought it sounded expensive--a nurse navigation program in the US is often an expense that cancer centers won't take on. So I asked Caleb how much it would cost to run the program for a year. The answer was just $16,000. Now, Caleb lives in Nigeria, a country where the financial infrastructure is poor, so it's difficult for him to get grants from US charities, even when he's asking for such a small amount of money. So, he decided that crowdsourcing the funding made a lot of sense. But the problem is that because he's from Nigeria, a country with the financial infrastructure is poor, crowdsourcing websites won't work with him. That's where I stepped in, and set up this site to raise the funds necessary to save the lives of breast cancer patients in Nigeria. Caleb and I are so grateful for your help in this important work!