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Kate Across America: Kate meets Gwen of South Carolina, a woman with multiple chronic illnesses all of which are unfortunately invisible.
Gwen is living with at least four medical conditions. These multiple chronic illnesses impact her quality of life and limit her ability to work. Despite such limitations, South Carolina’s unwillingness to expand Medicaid under the Affordable Care Act has left Gwen without access to health insurance.
Gwen has been diagnosed with gastroparesis, Mast Cell Activation Syndrome (MCAS), endometriosis, and hemiplegic migraines. She has been denied Medicaid (despite having an income that would qualify her in neighboring states) because she is not pregnant, elderly, or already receiving disability benefits. Gwen and her husband, whom is also disabled, fall into the cracks as members of the uninsured population.
After submitting a number of applications for disability benefits and coverage under Medicaid, she was ultimately denied. A judge disqualified her because while she did have documented symptoms, they did not take into account that her stable weight was only possible through medication. “The judge basically said, ‘well you’re not drastically underweight so…’. But it was only through lots of work with doctors and medication that I had gotten my weight back up. So, it’s medication-induced weight. If I stop taking the meds I’ll go back down. But I’m not willing to put my health at risk and do that just to be on disability.”
With the environmental hazards inherent in the vast majority of workplaces, Gwen is unable to work, in part because her MCAS weakens her immune system significantly. She has now devoted her time to focusing on her health and communicating about her multiple chronic illnesses to her community on Instagram. Her husband, a custodian at a local school, is the sole income earner. If they were to join a health insurance plan, it would cost over $700 a month, the equivalent of 70% of their monthly income. Thus, they have made the choice, if you could even call it a choice, to go without health insurance and rely instead on care through local low-income clinics.
Those clinics come with their own challenges. “When I go through the clinic it takes a lot of time and effort and pushing to be referred to specialists. I have been referred to a few specialists here and there. I’m actually on a wait list that’s over three years long for a new gastrointestinal doctor. I’ve been waiting for two and a half years.”
Chronic, often “invisible”, diseases require constant monitoring to manage symptoms and avoid unnecessary flares. For Gwen, this means a routine plan of care that includes specific medications. But she has found that doctors are reluctant to prescribe medications due to a knowledge gap with the invisible symptoms she is experiencing. After trial and failure with other medications, Gwen and her doctors are finally beginning to work together on an individualized care plan to manage her symptoms. In one case, Gwen orders her medication from Canada, as it is not approved by the FDA in the United States. “There are medications I need to be taking, yes. I run into a lot of barriers with that as well because of my various conditions. I can’t take a lot of the medications that would be standard for me because they don’t cover any of my medications at all.”
Still, Gwen pays nearly $200 a month out of pocket for necessary prescription medications. This limits her ability to save for future expenses or the prospects of moving out of her in-laws’ house. Making matters worse, Gwen’s access to food assistance programs was cut off without notice. She has been forced to choose between paying for her medications and paying for food on her table. “What we’re doing right now is just not working right. For medications alone it’s roughly $150-200 a month. It’s not sustainable.”
Chronic disease patients, especially those with multiple chronic illnesses, often report being underserved by their physicians. Perhaps the reporting of mental or emotional symptoms are not being taken seriously, or other symptoms fail to have “signs” that physicians can measure. “I’ve had these things for years and have struggled with the doctors to take me serious. But once I showed up in the doctor’s office with hives all over my body, with blushing all over my face looking like a red tomato, everybody jumped into action to do something to fix it because they could see it.” It was the first time Gwen felt seen and it points at the challenge of invisible symptoms.
This feeling of underservice is especially true for women. Their levels of pain are taken less seriously and result in a lower standard of care. Gwen, herself, has experienced trauma from that inability to receive adequate care, being told she was “just depressed” or “just anxious”. And she has witnessed that doctors sometimes bring prejudices into exam rooms and forget to listen to the concerns of the patient.
Gwen is coming to terms with how her disability and income put her at a disadvantage, and how she may never meet society’s definition of healthy. She is caught in a cycle. Because she cannot see afford to see a doctor to receive updates to her diagnoses, she cannot receive disability assistance. Without disability assistance, Gwen is unable to join the state’s Medicare and Medicaid programs leaving her uninsured. Lack of insurance makes it impossible to afford private plans through the South Carolina Marketplace. This forces Gwen and her husband to pay out of pocket for all medical exams, treatments, and prescriptions. And the cycle continues.
The economic burden of managing chronic disease causes immense stress. That stress is an instigator of chronic flares, resulting in a continuous loop that pushes Gwen further and further from being able to access affordable care.
“The poorest people of this state deserve to have basic health care. If you’re a poor person who gets sick one day, your whole life can be thrown out of whack because of the costs. I mean, one week in a hospital can basically destroy your whole ability to ever get out of any kind of debt or move forward.” – Gwen
We have had some thoughtful insights from patients with multiple chronic illnesses in other Voices of Value. I recommend reading registered nurse Lisa Viviano’s “Taking Back Control Over Your Chronic Illness” or author Sarah Shockley’s “Taking Your Life Back From Chronic Pain” or artist Callum Radley’s “Coming Out Chronic”.
Kate Pecora is a senior honors student at the University of Massachusetts Amherst studying Healthcare Policy and Political Science. She is an advocate for rare diseases, primarily in the neuromuscular space. She, herself, is diagnosed with Spinal Muscular Atrophy Type III. Kate is currently traveling across the United States in search of the most compelling stories of patient access, affordability, and quality for a book that will educate students on the importance of patient perspective. Instagram Facebook Twitter
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