Last week I attended the 3rd Annual Amgen Health Equity Summit at George Washington University here in Washington, D.C. As someone in the cancer advocacy space for a long time, I thought I knew a lot. But today I realized how much more there is to understanding the connection between prevention, access to high quality health care and diverse population enrollment to clinical trials.
Health equity begins at home. As advocates and health care providers, we must meet, educate and treat patients where they live in a language they understand.
LaQuandra S. Nesbitt, MD, MPH is the Director of the District of Columbia Department of Health. One of the things she said about the availability of various screenings took me by surprise. There are all sorts of screening trucks available for people to get free mammograms, free PSA testing, free diabetes testing – if you can do a test from a truck and screen people, there is a grant for that and organizations are funded to do them.
Because of these mobile mammograms, African-American women are actually screened at a higher frequency than white women, but they also have a higher incidence of death due to breast cancer.
What?
That was my reaction. Peeing in a cup or compressing your breast into an x-ray machine does not translate into high-quality healthcare. In many instances, it may not translate to the follow-up care they need at all. After all, the truck is not getting a grant for the follow-up – only for the screening.
During the second panel – Access to High Quality Care – Shonta Chambers, MSW, Executive Vice President, Health Equity Initiatives and Programs for Patient Advocate Foundation said, “Availability of quality insurance does not translate into access to high quality care.”
There is a disconnect between the first step of prevention and early detection goals of mobile screening programs translating into these people finding an affordable insurance plan and maintaining that plan – and then taking the initiative to find a doctor they trust and get the treatment they need.
It’s true that a majority of the people standing in line for free screenings do not have health insurance. But without a doctor they trust in a community they know, how can we expect to transition them to a quality treatment plan for at-risk patients?
The final panel was Health Equity in Clinical Trial Enrollment. I immediately thought that if we can’t translate a negative mobile screening test into a quality treatment plan, how in the world can we deliver more health equity to clinical trial enrollment?
What a relief to hear Jonca Bull, MD, Assistant Commissioner for Minority Health for the FDA, say: “What does equity mean in clinical trials? Putting the patient first.”
It seems like a huge mountain and Rev. Robert Lewis Foley, Sr, MDiv, DMin, DD, Pastor, Cosmopolitan Church of the Lord Jesus in Bronx, NY – “I don’t know how we solve it. The cost of healthcare keeps going up and up and up. How is anyone going to pay for anything?”
He’s right.
We also can’t expect people to sign up for things full of intimidating language and decipher informed consent forms I personally think you need a PhD (not to mention a whole lot of trust) to get through.
It seems to me that these things are all tied together, so perhaps rather than everyone running in silos of free prevention/early detection screenings, enrolling people in health insurance and encouraging them to find physicians and clinical trial centers — there must be a way to work in concert.
One thing is for sure: We can’t just walk in, open a Starbucks, and expect every community to succumb to our $5.00 latte lifestyle. Michelle Obama found this out when she recommended changing school lunches to include quinoa instead of macaroni and cheese. A perfectly tasty idea as far as I’m concerned, but as someone with twin toddlers, I know you can’t just show up with the organic lentils and expect kids to take the journey with you. I’ve started making healthy mac and cheese.
The most exciting ideas from today all came from innovation. One day, we may all have an online medical Facebook we can give our doctors and health professionals access to.
One day we may be able to test for all sorts of diseases — including cancer — with a blood test and genetic testing will become as standard as any other screening.
Given what we know about getting the right patient to the right treatment and right now – it should.
Next month, Patients Rising will be on Capitol Hill conducting a free skin cancer screening and briefing. I now have new questions to ask our doctors and our participants.