Melissa Adams VanHouten is a gastroparesis patient and advocate who manages an online support group for others with this chronic incurable condition. She has participated in Right Care Action Week for the past two years and is leading a digital Right Care Cafe this year to discuss the impact of health care costs on the gastroparesis patient community. Here is Melissa in her own words, on why participating in RCAW is important for her and her community:
As a gastroparesis patient and advocate my motivation for participating in RCAW stems not only from my own experience with diagnosis and treatment but also from the experiences of the people I see every day in my online gastroparesis support groups. It is their stories which have given me the desire to fight for better healthcare for our community.
Why we participate
Three years ago, I came across the Lown Institute site and, after hearing about Right Care Action Week, knew this was a project and a mission from which my community and patients everywhere could benefit. Many of my community members are incredibly discouraged by their healthcare experiences and long for a better system, a system in which their challenges are addressed, their care goals are valued, and their individual medical needs are considered. They require affordable, appropriate, patient-centered care. That is the reason I joined this grassroots effort – to speak up for myself and other patients and to collaborate with healthcare professionals and patients to help transform healthcare into a system that is effective, affordable, and desired by patients and healthcare professionals alike.
Right Care Action Week has connected us with a larger community of working diligently to change healthcare to better serve the needs of patients.
Our participation in RCAW the last two years has truly been invaluable. It has provided us the opportunity to interact with others doing everything within their power to better healthcare and to radically transform a broken system. It has allowed us to express our feelings about the current system, share our experiences with both superior and substandard care, and discuss the need for changes and our vision of what form those changes should take. Moreover, it has convinced us of the significance of our efforts to be heard and understood and has connected us with a larger community of brave, innovative, compassionate souls who see our plight and are working diligently to change healthcare to better serve the needs of patients and of all involved in our healthcare system. We have seen that there are indeed those who take our concerns seriously and are willing to fight for improved care. It has given us hope for a better future.
Why addressing cost of care is essential
This year’s RCAW theme, “The High Cost of Health Care” is particularly pertinent to patient communities such as mine. Most in my groups find themselves burdened by ever-rising health care costs, worry about continued coverage of their pre-existing conditions, lack adequate coverage, struggle to pay their high insurance premiums and cover increasing out-of-pocket expenses, and fear losing coverage completely. Many in my community, through no fault of their own, find themselves in financial ruin, despite having worked their entire lives. The issue of health care costs must be addressed in some meaningful way if they are to survive and maintain a reasonable standard of living.
We face financial ruin because of high health care costs.
I look forward to participating in an online “Right Care Café” event for RCAW this year, and I am grateful for the opportunity with which my community has been presented to share our stories, protest injustices, discuss solutions, and advocate for better healthcare.