ATTN: not written for pity, but for #awareness with real life examples

Week 6 of fighting with medical insurance and specialty pharmacy:
- missed 3 sessions of a biologic
injection a rare #autoimmune disease
- been on this treatment regiment for 2 years,
now with this extensive lapse I’ll have to
restart the regimen from scratch
- finally through the “withdrawal” stage but
now symptoms resurfacing at an alarming
rate (I’ve gained almost 20 lbs of fluid)
- there’s nothing more the doctors,
my insurance company, nor I can do…
it’s all in the hands of the specialty
#pharmacy who are still dragging their feet

While I’m just one of many patients who’ve experienced this type mistreatment, big specialty pharmacies and #medical insurance companies need to realize the FULL impact to their patients. I realize and am thankful that my case isn’t as severe as so many others, but I hope sharing this can help speak for them as well.

Because of lapse in treatment, patients lose:

PROGRESS:
All of the positive momentum they’ve gained by using their regimine. Possibly years of progress are now gone, forcing patients to restart their treatment plan from the very beginning.

MONEY:
In my case, the injections are supposed to be continuously spaced out as the body gets used to the treatment. Going from one treatment every few months back to every few weeks means more medication needed => more money spent by the patient.

TIME:
Untreated conditions can lead to debilitating symptoms often keeping patients from being able to go to holiday gatherings or even function in society. Personally, I had to reject some offers to see friends and family because the fluid pressure on my body made it impossible for me to walk or stand for too long.

WORK/LIFE OPPORTUNITIES:
2 years into my treatment I was finally feeling more independent and able to plan my life more than 24 hours at a time. Because of my relapse, I’ve canceled planned events such as leadership conferences, family trips, etc. I’m very lucky to have a flexible work schedule and wonderfully supportive team, however for others they may lose work days do to their disabling flair up of symptoms.

HOPE:
For those with chronic conditions, we lose hope in the medical system which adds to our medical trauma. We feel even more helpless than we already do in society as we’re completely dependent on the system to maintain our health and lives. Even reaching out early to the specialty pharmacy and insurance in order to best avoid delays may still result in lapse in treatment. We can’t help move it along and we didn’t do anything wrong to deserve this.
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#chronicillness #PatientAdvocacy #advocacy #EducationIsAdvocation #HealthCareSystem #HeathCare #fediverse