Women in Government is an outstanding organization that brings together female legislators from across party and state lines to work on our community’s most pressing problems. They share experiences, bills, policy knowledge and great ideas, and it’s a terrifically energizing group of people.
The Chronic Disease Coalition was lucky enough to be invited to speak at their June policy conference. With CDC board members and event sponsors Fresenius Medical Care and Otsuka, we presented a session titled “Data-Driven, Patient-Centered,” to discuss the power of lawmakers engaging with patients and addressing their needs through policy changes, as well as show a new study from Otsuka that demonstrates the cost efficiency of robust patient access to antipsychotic medications.
Here are the remarks given by CDC Executive Director, Mary Kay Clunies-Ross:
- One of the things that struck me when I joined the CDC three years ago was the similarity in the journey of the female elected officials that I’d known, and the journeys of people with chronic disease. Here’s what I mean:
- It begins with a growing awareness that something is wrong. Whether it’s the civic body, the school body, or the physical body, there’s an instinct that things aren’t working the way they should.
- Consult with experts
- Try to articulate what’s wrong
- Have your concerns minimized with expressions such as “It’s not that bad” “Other people feel that way” “It’s all in your head” “Don’t make such a big deal of it.”
- Feelings of isolation, maybe even paranoia, guilt, shame for causing problems
- Then something changes and you find others who see what you see
- You build a group, a vocabulary, a network
- You find better experts to diagnose and treat what’s wrong
- Better armed with knowledge and a community, you start to ask for things. Insist on change, insist on being treated with respect, and having your concerns treated with respect.
- And then you know what you’re up against, and the real advocacy work begins.
The advocacy journey of people with chronic diseases is amazing, but so are their insights into the healthcare system. They interact with all parts of the healthcare system more than anyone else does. Let me share a few things I’ve learned from them on that, too.
- People want to be healthy, to work, to take care of their families. No one is choosing to stay sick, and everyone wants preventive care over crisis care and ERs. So if they’re not doing everything they’re “supposed to” to treat their disease, especially when it comes to preventive care, I assure you, they are facing insurmountable barriers. The problem is not patient motivation.
- Chronic disease is absurdly costly, and not just financially. The opportunity cost of chronic disease will break your heart. We have a couple of ambassadors who are college age, and they have to balance the cost of medical supplies with school supplies. Energy levels dictate job prospects. Vulnerable immune systems dictate physical comfort from loved ones.
- There’s not as much blaming of the healthcare system as you might assume. People want things to be better, of course, but they don’t generally blame the system. The system fails them, but also, the system saves them. The system gives them YEARS of life that they wouldn’t have otherwise. We need insurance and doctors’ visits and miracle cures. Their view is nuanced and hopeful because they’re directly experiencing the improvement in care, drugs, record coordination, insurance coverage.
- Not all chronic diseases are bad- sometimes it’s an extraordinary victory. Remember when Magic Johnson announced he had HIV? It was a death sentence—and now is not. Cancer is often cured and sometimes chronic. So there are some amazing victories too. More and more innovation is about early diagnosis and intervention, instead of waiting until people end up in the ED, and that’s extraordinary.
- Our world is making us sick. It’s too easy for those of us involved in healthcare policy to think that healthcare policy is the problem and the solution. It’s not. We, especially as Americans, live in an unhealthy world. We are exhausted, malnourished, sedentary, depressed, stressed, dehydrated, isolated and worse. We’re chronically sick long before we get to the doctor’s office. One of our handouts in the back is just a snip of a Washington Post series on life expectancy, and the first topic they take on is chronic disease. I encourage you to read the whole series, it’s incredibly important data.
- You don’t have to take my word, or Nathaniel’s word, for it. We’re working to help patients advocate for themselves, and one of the steps we encourage them to take is to ask for meetings with you. While every disease and patient is different, if you open the door, you’ll hear important perspectives that will help you make good, patient-centered decisions.
In addition to our work to bring the patient voice to the table, we do have a couple policy tools that help reflect the needs of patients across the disease spectrum. Our policy map is a free tool on our website to help people in any part of the country know what bills are in play.
Most bills listed align with our policy priorities, but others are added at the request of ambassadors or other partners. For example, one of our ambassadors (Michelle Johnson) was working on a housing bill in Illinois. She showed the connection between the bill and vulnerable chronic disease patients, and we sent a letter of support.
These are our core policy issues, as well as a couple of examples of bills related to each objective.
ACCESS: To providers and treatments
Step therapy, non-medical switching, prior authorization, living donor protections, Medigap
AFFORDABILITY: At the patient level
Co-pay accumulators, third-party assistance, PBM transparency
REPRESENTATION: In policymaking
Rare disease advisory councils, chronic kidney disease task forces, health equity, social drivers of health
And through it all, we work to remain flexible to the changing needs of the chronic disease community. Our patient ambassadors and organizational partners help guide this work, but there’s more. Right now, we are out in the field with a nationwide poll of chronic disease patients. We ask them a broad variety of questions about their lives, including:
- How much do you worry about the effect of your disease on your family? Friends? Employer?
- Were you ever told by a healthcare provider that your condition was “all in your head”?
- Does your insurance company cover the cost of your medication, enough so you can take it according to plan?
- Does your condition impact your ability to work?
- Does your condition negatively impact your mental health?
The findings are going to be fascinating and we look forward to sharing them with you on July 10.