Patients with Digestive Tract Paralysis may have one or more of the following:
What these conditions all have in common is some degree of paralysis or ‘dysmotility’ of some kind somewhere in the digestive tract. This dysmotility makes it harder for the digestive system to absorb nutrients and fluids or to expel waste. This in turn creates a host of other problems, some potentially fatal, that manifest as major symptoms for DTP patients.
Several people from the Digestive Tract Paralysis community have written articles for Patients Rising and even participated in some of our educational panel discussions. A familiarity therefore with the problems facing the DTP community gave rise, over time, to deeper questions.
FORMING A PARTNERSHIP
Patients Rising provides support and education to people with chronic and life-threatening illnesses. We work with patients to advocate for access to the treatments, innovations and care they need. G-PACT provides services and reliable information to the Digestive Tract Paralysis community. We came together to raise awareness and to investigate what some of the access issues for DTP patients might be. Together we devised a 9-question survey. G-PACT shared the link to that survey in the G-PACT Facebook Group and just over 100 people voluntarily and anonymously completed it. These are some of the findings.
WHO ARE THE DIGESTIVE TRACT PARALYSIS COMMUNITY?
Age and Race
The people who participated in the survey came from the G-PACT Facebook Group. Ages ranged from under-18 to over-65 but the majority (about 77%) fell between 25-64. They were primarily Caucasian (94%), the rest being a mix of Black, Native American, and refused-to-identify.
Household income and Insurance
Nearly a quarter of responders (22%) claimed to have a total household income of under $20,000 a year. Of these, 77% were on some form of public insurance (Medicare, Medicaid), while 18% had some form of private insurance (work, spouse, exchange plans) and 4% had no insurance at all.
FINDINGS
1: REPORTING THEIR CURRENT HEALTH STATUS
We asked, “How would you rate your current health status, as of today?” A standard scale of responses were offered:
1 being Poor, 2 being Fair, 3 being Good, 4 being Very Good, and 5 being Excellent.
Half of all responders (49%) reported their current health status to be a score of 2 out of 5: FAIR. Twenty-nine percent (29%) scored their current health as a 1 out of 5: POOR, and 23% scored it as 3 out of 5: GOOD. No one out of 100 responders scored their current health as Very Good (4 out of 5) or Excellent (5 out of 5).
2: MONTHLY OUT-OF-POCKET COSTS
Ninety-nine responders answered the question, “How much money, in US dollars, do you spend on healthcare in a typical month?” They were instructed to take their time to “consider health insurance premiums, deductibles, copays, co-insurance fees, transportation, child/pet care during doctor visits / hospitalization, and any other out-of-pocket expenses for medical, dental, or vision services and medications”.
The range of out-of-pocket healthcare spending ranged vastly. The median amount was $350.00 per month, which translates to $4200 annually. For perspective, according to Healthinsurance.org, the 2019 out-of-pocket-maximum is $7900 for an individual.
3: COVERAGE AND COST FOR CONSUMABLE MEDICAL SUPPLIES
We asked specifically about insurance coverage and out of pocket costs for medical supplies and equipment. We defined medical supplies and equipment NOT as durable medical equipment but rather items like needles, tubing, sharps containers, ostomy bags, test strips and the like – consumables.
Seventy-six percent (76%) responders said they had coverage for medical supplies and equipment, and 24% had none. Of those WITH medical supplies coverage, the average monthly out-of-pocket cost was $167.70. Of those WITHOUT medical supplies coverage, the average monthly OOP was $437.50.
All those who utilize medical supplies had some kind of monthly cost. We saw no noticeable differences between public, private or some combination of insurances.
4: EXPOSURE TO STEP THERAPY AND ITS IMPACT
The practice of insurers intervening in a patient’s treatment for non-medical reasons goes by a few different names – non-medical switching, fail first, or step therapy. But the practice of ignoring a doctor’s judgement to save the insurer money, by any name, stinks.
Participants were asked “Has your insurer for any reason ever influenced you to try a medication or treatment other than the one you and your doctor agreed on (“fail first” “step therapy” or some other non-medical switching)?” and all participants responded (n=100).
Fifty three percent (53%) reported that YES they had been subjected to Step Therapy, and 44% reported, NO, they had not. The question did not apply to 3% of the responders, because they did not have insurance.
Of those who said YES, they had been subjected to Step Therapy (53 people), there were 37 who talked about the consequences of having been subjected to it.
This finding tells us that slightly more than half of all patients had, at some point, been told by their insurance that they could not get access to the treatment that their doctor decided would be best. Furthermore, this was more than an inconvenience or a waste of time. The use of Step Therapy extends a patient’s suffering, or delayed effective treatment long enough that conditions progressed or worsened. Thankfully, several states have laws restricting the practice of Step Therapy.
5: PRIMARY ISSUES GETTING IN THE WAY OF QUALITY CARE
Lastly, we wanted to know what kinds of access issues DTP patients were facing. We asked, “What are the obstacles you face between your healthcare needs and getting that care?” In order to capture responses we could not predict, responders wrote out their answers.
Eighty-seven (87) responders answered this question and we categorized their responses as follows:
CONCLUSION
Based on these findings, Patients Rising will follow up with G-PACT by creating educational materials on the following issues:
- Strategies for reducing monthly out of pocket costs
- how different states view step therapy and how patients can work with their doctors to prevent being victim of it
- Finding reliable sources of affordable medical supplies and equipment
As for the obstacles to access, some good ideas might include:
- Finding or creating a listing of motility specialists
- Identifying or creating an educational resource for getting the most out of health insurance
- Watching the Patients Rising University (PRU) panel-discussion recording, “Navigating the Cost of Care: A Financial Planner”. It features experts like oncology financial navigator Clara Lambert, health and wellness coach (and DTP patient) Samantha Smith, and Terry Wilcox.
- Watching the PRU presentation, “Managing Chronic Illness: A Guide to Organizing Your Care”, which includes a section on financial management presented by Whitney Morrison, the principal financial advisor at LegalZoom.
HOW YOU CAN ACCESS HELP
This conversation between organizations will continue and is vital to understanding the full picture of the challenges patients face. You can keep up with educational information and events by following G-PACT on Facebook and by becoming a member of Patients Rising – both are free and give great dividends.
As the Director of Patient Content at Patients Rising, Jim works very closely with the people who have healthcare 
war stories to tell. Trained as a writing consultant at Columbia University, Jim has helped writers of all levels find and refine their voices. He is a writer, editor, author and certified medical assistant with over 20 years of experience in healthcare. Jim has spent over two decades in clinical care and research at some of New York’s biggest health institutions doing hands-on patient care, education and advocacy for rare disease patients. He has worked with several non-profit patient support organizations doing outreach, advocacy and creating educational content.
