By Maria Robinson
October 23, 2020
As the COVD-19 pandemic continues to cause problems for Americans across the country, many people have been concerned about their ability to access the care that they need. Naturally, many patients are worried about where they can turn if they fall ill, and what it could potentially cost them.
Being able to see all the necessary care providers is of particular concern for patients like me who have end-stage renal disease (ESRD). ESRD can compromise a patient’s immune system, making us vulnerable to serious health problems even if they were to just get the seasonal flu. Now, with a virus as dangerous as COVID-19 posing an especially serious risk, patients need to be sure we can easily and affordably access the care they need.
Of course, even without the presence of a global pandemic, this can be uniquely challenging for kidney patients. Along with seeing a primary care physician and a nephrologist, a large portion of ESRD patients also need to see cardiologists or other doctors to treat additional health problems as well. If patients are not able to see all the providers they need, and if their care is not properly coordinated, their overall health could suffer.
This is something I have experienced in my own care. I am entering my 24th year of in-center hemodialysis, and since I first started I have had to balance my dialysis treatments, appointments with my rheumatologist to treat Lupus, pain management sessions to help my prosthetic and more. Back in 2000, I even had to travel dozens of miles to receive open-heart surgery.
Unfortunately, there has been increasingly less coordination among my doctors since I first started. Initially, I even had to go so far as to leave behind my family and my life in Georgia to move to Maryland, so that I could have readier access to all of the treatments I need. Over the years, though I’ve increasingly found myself responsible for making sure all of my doctors have access to lab results, medication information, appointment updates, and more so that we can avoid any treatments interfering with each other.
Solutions could soon be on the way for ESRD patients, however. Congress is now working on a new bill called the BETTER Kidney Care Act, which would help doctors ensure ESRD patients are receiving the treatment they need. Whereas many patients currently find that the burden of making sure each of our doctors has the latest information on their care plan falls on them, the BETTER Kidney Care Act would put a system into place which allows their doctors to instead easily share information with each other and better coordinate treatments. It’s a solution that will improve care, limit costs, and allow patients to spend less time in the doctor’s office.
Perhaps most importantly, the BETTER Kidney Care Act protects patients’ ability to access the care we need. While some claim the bill limits patients’ ability to access necessary care, those assertions are false.
In truth, under the BETTER Kidney Care Act, Medicare beneficiaries would still be able to access all of their Medicare providers. That means patients currently on Medicare can continue seeing their existing providers without worrying about their relationship with their doctor being affected. Even in the case where a patient receives a transplant or elects for hospice care, the patient will also still retain access to the benefits provided by the BETTER Kidney Care Act.
In addition to allowing patients to access all of their Medicare providers, there is also no preferred network provision in the BETTER Kidney Care Act. Under the bill, patients will be able to visit the doctors they want to see and obtain their medications wherever works best for them without needing to be afraid their costs will go up. All of those choices would instead remain in place.
Furthermore, if a patient decides their coverage isn’t working for them, they would have plenty of opportunities to change it. These include opting out within the first 90 days, annually, during special election periods, and if their principal diagnosis were to change. In fact, the bill even allows patients who change their modality and go on home dialysis, to change coverage and find a plan that meets their needs without fear that their choices will be limited.
Dialysis treatment has come a long way, but there is still a long way to go. In order to guarantee patients can access both the level and the quality of treatment we need, Congress must pass the BETTER Kidney Care Act. It is the right decision for dialysis patients, and will help to improve care outcomes in the years ahead.
Maria Robinson is a member of the Dialysis Patient Citizens Board of Directors.