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Stop Minnesota HealthCare Programs from restricting patients with Mast Cell Disorders

This petition had 11,605 supporters

Hello -

My name is Erin Margaret Joyce.  I have a rare and complex disease called "Mast Cell Activiation Disorder (Mastocytosis).

6 years ago I was on MN Stated Funded Insurance following the birth of my daughter.  I had a high risk pregnancy followed by unexplained health issues. Specifically intense pain in my right upper quadrant and chest, random allergic reactions, GastroIntestinal Issues, and Severe Pelvic Pain.

I was working with a Primary Care Provider through a local HealthCare system, and she went on a medical leave. So I saw other partners in her practice, I used my insurance resource line (Blue Cross Blue Shield) to consult with a triage nurse when conditions arose.. I was referred to the emergency department many times as a result.. each time getting referrals to specialists, but no care advocation... additionally my primary provider continued to be on leave due to undergoing chemotherapy for breast cancer.

As a result I was flagged by Blue Cross Blue Shield to be placed on a "restricted recipient" program. I attempted to appeal this with presenting the information I noted above. That 1) my primary care doctor was out on leave... so I saw their Associates (and stayed within the same healthcare system) 2) Was following the advice given by the insurance companies triage line, as well as the healthcare systems on call nurses/providers.

I was denied my request to be released from this program and placed with a nurse coordinator Via Blue Cross Blue Shield (Linda H.) Instead of assisting and advocating for my care, she shamed me- telling me that my trips to the emergency room were un necessary, and that this condition was in my head.  I was treated like a criminal.  (See Medical PTSD article written

At the beginning of the year I switched insurance carriers to UCARE and was still in the states "Restricted Pool" however was treated with a hair bit more dignity by my care advocated nurse. During this time I made the decision to lose weight by removing sugars from my diet- hoping that this would somehow cure these symptoms that I had been told were " In my head"...

Throughout the next year I would have really strange medical issues arise- Unexplained allergic reactions, Low blood pressure, bouts of vomiting and ongoing nausea... my menstrual cycle incapacitated me.. and when pain medication was used (after finally having a laparoscopy and learning that the source of my pain was endometriosis and Adenymyosis) I would sometimes end up in crippling pain with my chest tightening to the point 911 would be called. I would get transported to the ER, be told that "My labs were slightly elevated because of XYZ.." but never even given a second look.

By this point I had transferred my care to another healthcare system that another family member received care through. My primary provider was amazing, took time to listen..  referred me as needed, but had no explanation as to what was going on in my body. I went back to school and became a certified medical assistant, and educated myself as much as I could about health conditions. I worked in a chiropractors office and relied primarily on natural health management, except for when a joint would dislocate, intractable vomiting, or my menstrual cycle had me in pain beyond that of childbirth.

This continued until October 22nd 2012, two days prior I had another "Incident" where I called 911.. The EMTS came and scooped my off the floor and told me "I didn't look too good"- The ER doctor gave me some fluids and zofran.. and the usual "your labs are slightly elevated"....

October 22nd 2012 though it was a Monday. It was my first day at a new job, ironically a job in health insurance. I woke up in excruciating pain- but wrote it off as "in my head" as I had just been seen in the ER two days prior (It was a Saturday otherwise I would have seen my primary doctor) - As the day went on I started to realize that indeed I was dying... Something really wasn't right.  After training had concluded, I thanked the trainers but advised them I was sick and was not sure if I would be back.

I was hopeful it was just my appendix or something.. I managed to get my self to the same ER that I visited two days prior, despite telling them it was an emergency, I laid in the waiting room for about 3 hours, with the only comfort being that If "something happened" at least I was already at the hospital....

Hey Guess what? ! I really was sick! (who would have thought?) those bouts of vomiting and chest crushing pain was actually related to a biliary duct spasming shut, and causing bile fluid to back up into my pancreas, thus giving me mini bouts of pancreatitis... however ignoring this for so long led to liver failure.. all because my insurance company (Blue Cross Blue Shield) and the Minnesota Department of Human Service State Ombudsman ignored my medical need, and treated me as a pill chaser.

That was 6 years ago... this story could go on and on, but I will digest this to the fact that as a result of working for Medica, I learned how to navigate my healthcare. I learned what resources were available, and how to use a "Primary Care " Clinic/Provider. I learned that I can not count on Healthcare systems to advocate for me, and needed to keep paperwork on everything. I learned to document everything, and keep updated lists of my providers in the event emergency care was needed.

I learned that I have a disorder known as Mastocytosis. I learned that I have a connective tissue disease know as Ehlers Danlos Syndrome ( which symptoms were present but never acknowledged.. some of these health issues documenting back to when I was 5 years old.. )

I learned that providers will treat those with private commercial insurance better than those with state funded. ( Due to my disease my ability to work fulltime is diminished meaning that I now use a state subsidy for my health insurance via MNCARE/MA)

I learned also that once in a while, you will connect with providers.. who look for the zebras (Medical Slang for Rare disease) .. medical providers who are invested, and listen, and when they do take the time to listen..  they will help.

My gratitude is deep for my current care team, which was assembled as a result of a lot of medical trauma, where previous providers, healthcare systems, and insurance companies have failed me.

Years of therapy will not erase the mental damage done due to Medical PTSD... but instead.. make the blood in my veins boil when I hear of other Mast Cell patients being treated the same way.

So this is where this petition comes from.

Minnesota previously has been a Mecca for Mast Cell Patients, due to the U of MNs Specialist, Dr. Afrin. Unfortunately is wait list was very long (I was on said wait list which was 2 years long) A handful of other providers in the Twin Cities have been around to assist Mast Cell patients... but either have full practices, do not accept insurance, or out on medical leave (does this sound familiar? )

As a result, there are mast cell patients here in the city ( I think like 20 of us or so) .. We rally together for support, but our needs are complex. Patients that previously had an primary provider, or specialist are waiting to be seen - and in a state of purgatory. Emergency Department visits are vital to our health when allergic reactions occur, Majority of us also have Ehlers Danlos Syndrome ( A connective tissue disorder) .. and require unforeseen care.

As a result Mast Cell Patients on State Funded health programs are getting flagged for the Restricted Recipient Program ( I have been off this since 2012 as a result of private insurance, and doctors who care) - However hearing of the sanctions placed on established patients, having to jump through hoops of fire to get their medications, and care- at no fault of their own...  Ignites the VERY CLEAR NEED THAT THE STATE OF MINNESOTA AND MINNESOTA HEALTH CARE INSURANCES DO NOT UNDERSTAND MAST CELL DISORDERS.

And before they make decisions on our health.. need to be educated.


Ideally this would include setting up specific training for those who work in this program IN PARTNERSHIP WITH THE MASTOCYTOSIS SOCIETY AND PATIENTS to educate and advocate to meet the needs, BY helping patients establish care so that EMERGENCY ROOM visits are lessened as a result of patient care being provided.

I am one of a very small handful of patients, whom has been able to reduce the need for emergency care as a result of having providers working together to help me manage my condition better on my own. As I hear of more folks experiencing the trauma I had, I have no choice but to start making noise.



MAST CELL PATIENTS already suffer enough- It is time to  educate and advocate.

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