How do I pay for all this: Remistart

Remistart is a medication assistance program provided by Janssen Pharmaceuticals to assist patients taking Remicade with their bills.  Remistart provides up to $10,000 of medication assistance in a given year.  The intent of the Remistart program is to cover most of the drug costs until a patient's deductible has been met.
As I mentioned earlier, my insurance has a "maximum out of pocket" per year clause.  I highly recommend that anyone with a chronic condition look for an insurance plan with a clause like this.  My maximum out of pocket costs this year are $10,000.

I've gotten my first bills for my Remicade infusions, so I'll share those with you and show how this all works

Bill for first infusion:

Bill for second infusion:

In tabular format, this is what it looks like:

	Infusion 1		Infusion 2
	Drug	Nurse	Drug	Nurse
Total Billed	$19,920.61	$1,200.00	$19,920.61	$1,200.00
Discount	$6,573.80	$396.00	$6,573.80	$396.00
Insurance	$9,200.10	$683.40	$11,344.79	$683.40
Deductible	$2,523.16	$0.00	$0.00	$0.00
Copay	$1,623.55	$120.60	$2,002.02	$120.60
Remistart	$4,141.71	$0.00	$1,997.02	$0.00
Out of Pocket	$5.00	$120.60	$5.00	$120.60

• Italicized numbers count towards my deductible and maximum out of pocket health care costs.
• Bolded numbers are what I must pay.

After these two infusions, I've met my deductible of $3,600 (partially from expenses not shown) and am getting very close to my maximum out of pocket costs for the year with only about $1,900 left before reaching this number.

Remistart has covered $6,138.73 which leaves $3,861.27.  My next infusion will consume another $1,997.02 of the Remistart benefit and leaving $1,864.25 of benefits.  Since my next infusion will get me to maximum out of pocket benefit, I won't need this remaining benefit.



In summary
My first infusion satisfied my deductible requirements, so subsequent infusions will be covered by insurance.
My third infusion will reach my maximum out of pocket for the year and all other medical expenses will be covered at 100%.

Diet 3

This is a follow-up to two other posts that I wrote.  The first of these, Diet, was written 1.5 years ago towards the end of 2013.  The second, Diet 2, I wrote just a few days later.  I wrote a celebratory Full Diet post when my surgeon permitted me to resume eating normally late last year.  However, after that post I experienced a bowel obstruction and was reduced the liquid diet again for a while.

Since the first of these posts, I had a small bowel resection in which the diseased portions of my small bowel were removed.  That included a fistula (a hole in my intestine) and several strictures (almost closed off portions of the small bowel).  The normal / healthy size of the small bowel is approximately 1 inch to 1.5 inches in diameter.  At one point my small bowel was down to about 0.2 inches in diameter.

The correction of this problem has tremendously altered what I can and can't eat as well as changed other aspects of my life - mostly the chart has switch to "I can eat"!

My current, post-operative, food chart looks like this:

Food Type	Bleeding	Obstruction	Cramping	Gas	Diarrhea	No issues
Nuts
Popcorn & coconut
High fiber vegetables
Carbonated			Often	Often
Alcohol			Often	Often	Often
Spicy foods
Ensure / soy protein			Rarely	Rarely	Often
Caffeine
Dairy
Gluten
Low residue
Multivitamin
Pureed vegetables

 

I can now eat almost anything that I want.  I rarely get cramping or gas unless I consume very specific items.  This now only includes carbonated beverages, alcohol, or soy protein.  I can sneak in some carbonated beverages provided they're served in an open container.  This allows the worst of the carbonation to release into the air before I drink it.



I have very high hopes that as Remicade brings the inflammation of my disease under control that I will be able to resume drinking moderate amounts of alcohol when the mood strikes me.  However, I will probably continue to avoid the soy proteins and carbonated beverages.  I'm just too much in the habit of not drinking them and I don't really miss them much.

Ups and Downs

Since my last infusion (2 weeks ago), I've had many nights that I've gotten to sleep through and my abdominal pain has improved enough that I've only needed 3 pain pills during that time.

However, the last two nights my bowel movements have increased and I haven't been able to sleep through night :(

I'm worry that the Remicade infusion has already worn off after just two weeks.

Then again I'm still on my loading doses and maybe the bowel problems are only temporary.  I am still feeling pretty good and as I posted earlier this evening, I was able to go on a run.

Colonoscopy pathology report

In general nothing surprising.

Upper GI, no abnormalities

Lower small bowel, several biopsies showing inflammation consistent with returning Crohn's Disease

Large bowel, a couple of random biopsies show inflammation - this is new and not welcome news.  The technical term used was "focal active colitis"

I have an appt at the end of April with my doctor at which I will explore this new issue.  In the meantime, I'm hoping Remicade will take care of this issue.

FINAL PATHOLOGIC DIAGNOSIS:

A. Duodenum, biopsy:

Duodenal mucosa with intact villous architecture.
Negative for intraepithelial lymphocytosis or sprue-like injury.
Negative for foveolar metaplasia or Whipple's disease (Alcian blue/PAS stain).
Negative for luminal parasites, dysplasia or malignancy.

B. Ileocolonic anastomosis, biopsy:

Focal active ileitis with erosions.
Negative for pyloric metaplasia.
Negative for granulomas, dysplasia or malignancy.

C. Ileum, biopsy:

Chronic active ileitis with pyloric metaplasia (Alcian blue/PAS stain).
Negative for granulomas, dysplasia or malignancy.

D. Colon, random biopsy:

Focal active colitis.
Negative for granulomas, dysplasia or malignancy.
 

Comment:

The biopsies from the ileocolonic anastomosis show small bowel mucosa with focal neutrophilic inflammation. The biopsies from the ileum show small bowel mucosa with neutrophilic inflammation involving the surface epithelium, lamina propria and crypts along with extensive pyloric metaplasia; consistent with chronic active ileitis. The biopsies from the random colon show colonic mucosa with focal cryptitis and focal increased plasma cells. The clinical history of Crohn's disease is noted. No granulomas, viral inclusions, dysplasia or malignancy is identified.

COMMENTS:

CLINICAL HISTORY:

Signs, symptoms, medications and previous diagnoses:

Crohn's disease, large and small bowel, followup

Endoscopic findings:

Anal fissure and anal canal stenosis, patent end-to-side ileocolonic anastomosis, multiple erosions in neoterminal ileum, normal colon

ADA, invisible disabilities, and "Reasonable Accommodations"

I am writing this as a follow-up to my post made nearly a year ago Stuffed!  I've decided that I do need to write a letter requesting reasonable accommodation.

ADA stands for "Americans with Disabilities Act."  This act provides protection in the work place for people suffering from disabilities, as long as the employee can perform the job with "reasonable accommodations."


Invisible Disability

People with conditions like Crohn's Disease, MS, UC, RA, PsA, AS, etc. all suffer from disabilities that are not apparent to others.  This type of condition is known as "Invisible Disability."  NPR just had an article on people with Invisible Disabilities.  The subject of the article was a lady with Crohn's Disease.

As sufferers of "invisible disabilities" each of us needs to make a decision in our lives. Do we attempt to fake normality or do we seek protection from the law?


Get ADA protection or not?

If your disease is often bad, getting protection is (IMO) the better strategy. Consider contacting your HR department and writing an official letter to them about what reasonable accommodations you might require from your employer to help you with your disease. This might be time-off for infusions, doctor's visits, diagnostics, treatment, etc. or just time away from your desk for bathroom breaks, or other things like eating frequent small meals. Talk with your doctor about it, they might have information to help you write the letter.

So far my supervisor/manager is going to bat for me but I think it is time to file something official rather than just handling this unofficially.  This protects me, my supervisor, and my employer in cases like this.

Things to put in the letter




Some things I think should be included in my letter:

• Frequent medical/sick day requests for scheduled visits & treatments
• Frequent sick day requests with no warning due to severe pain
• Frequent bathroom breaks up to 6 or more times per day 
• Need to eat frequent small meals throughout the day

Things to ask my doctor
 
Some questions that I am asking my doctor about this letter:

• Are there other things that I should include to cover my Crohn's Disease?
• Do you have a standard letter that you use to send to employers?
• Do I normally need to get Dr. Harrison to sign or send this to my employer for me?
• Is this something that should be covered by FMLA?

I am really hoping that Remicade eliminates or drastically reduces my need to rely on this, but putting it in place will provide me with some peace of mind.

The down side

I have always understood why we would not want to do this. I always thought that putting this letter in my file might place a "glass ceiling" over my career.  If I don't get anymore promotions, it will make me a bit sad but I can live with it.
 
With the tremendous number of days I've required away from work over the last year or so, now I'm much more concerned with not getting fired "for cause" because of missed work days.  My attitude is more I'm just biding time until retirement now.