Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Meeting Minutes - January 4 and January 18th, 2014

January 18th, 2014

TOPIC:  Open Forum

We opened the group by starting with an "ice breaker".  "If you were a color today, based on your mood, what color would you be and why?"  The answers were fun and interesting, and surprisingly deep!

  • One member shared that her recent injury set off a "flare up" of symptoms.  She is using an accupuncturist and states that she could probably benefit from a chiropractor.
  • The group discussed how chirpractors (among other types of manipulation directed at healing) can sometimes "forget" how delicate our bodies can be.  The group were all in agreement that we engage the Practitioner in a dialogue before they start to treat us wherein we tell them how these treatments can cause us to experience an increase in symptoms.  These same practitioners, over time, can appear to us as if they "forget" the guidelines that we needed to set.
    • Group brainstormed how we could take better care of ourselves by directing the Practitioner at the time care is being given by making statements such as, "Today what I really need you to work on is _____" (insert whatever body part is really hurting you) or perhaps by stating "I need you to check in with me regularly as we go so that I know we are on the same page". 
    • Sometimes planning ahead what your goals for that treatment are and then stating them outloud to your Practitioner can help you avoid being "overworked" on and then possibly loosing a day or two post-treatment to a "flare-up".
    • Group reminded that just as we have to re-evaluate our friendships and other relationships from time-to-time, it is necessary to re-evaluate our doctor's and practitioners from time-to-time.  Is this Practitioner still on the same page with me?  And if not, will a conversation get us back on track?  Or are they no longer a helping member of my team?
  • One group member shares difficulty in having to rely on others to do most of her important tasts
    • One member suggested ordering stamps on-line or buying stamps at the check-out line of certain grocery/quick mart type stores.  Snail mail may aleviate the need for having to rely on others for rides to run certain errands.
  • One member has taken one step toward finding a Primary Care provider for herself.  She obtained the name of a holistic MD that a friend of her's recommends.  The next step she will find out how much this doctor charges and if he accepts her insurance.  This member is struggling because she now has an Obamacare plan and with the deductible, anything she pays at this time is out of pocket (until that deductible is met). 
  • One member shared that she had a job interview with a well-known large company that would offer great benefits, however, the job would be very stressful (even though the stress would be good stress), the job itself would be high pressure, goal oriented, and it is located across the country so she would be leaving her support system, friends, home, and our group!  She is hoping something will become of the temporary position she is currently doing.
  • One member asks for suggestions as to what to do if they cannot afford to pay for an office visit for doctor appointment.
    • The book came up "From Fatigued to Fantastic" by Dr. Teitelbaum
    • One member states they do better when they are not focusing
  • Group discusses side effects of pain medications such as toxic levels to the liver with Acetaminophin and intestinal issues with Ibruprophen.
    • Discussion as to "what pain level is tolerant for you?"  From zero - ten where zero is NO pain and ten is "giving birth" what number would you be OK with?  A four?  A five?  A three?  Chances are you can tolerate some pain (and do).  Zero is never the goal of pain management because that is pretty much unattainable.  But can you get to a tolerable level of pain?  If you are not at a tolerable number most of the day, you need to discuss with the doctor responsible for managing your pain.
  • One member reminds us that nutrition is the first building block of health.
  • One member states that good health is a multi-pronged approach such as a nutritionist, a pain-management doctor, a chiropractor, etc...  the discussion included that this approach does need a Primary Care Provider to coordinate care.  Also, if you are experiencing symptoms of an illness like a sore throat or cough, you would need the Primary doctor, and if you are way more fatigued than usual, you would need to be sure that  you are not having cardiac issues or other deeper problem
    • Discussion of the fact that we can accidentally blame any and all symptoms on our Chronic Illness and that is not always the reason for our symptoms
  • One member with Chronic Fatigue Syndrome (CFIDS/CFS) states that from her perspective there is no progression on a treatment for CFS, there is no discussion in the media and there is no acceptance that this is a real and devistating disease. 
    • Discussion that Fibromyalgia (Fibro) is now more "mainstream" and that most of their friends and family have heard of it.  This could be due to some of the medications like Cymbalta which runs advertisements.  Because there is no medication for Chronic Fatigue Syndrome these opportunities to inform the public are not there
  • One member shares encouraging and exciting news from the Tisch Center in NY that Stem Cell research is in the testing stages!  Meredith Viera's husband, who has Multiple Sclerosis (MS) is currently in the process of having his stem cells removed and will have them replaced in April.  This could bring an amazing treatment option for sufferers of Multiple Sclerosis in the next 3-5 years!
    • Because Multiple Sclerosis is an autoimmune disease, this important information could translate to treatment for the rest of us down the road!!!
  • One member shares that the Assembly will be voting on a Sales Tax which will support research for other diseases that will benefit from the Medical Marijuana Program (MMP).... 
  • One member shares that "neurotransmitters" are being found helpful to treat pain in a similar but different way as an antidepressant! 
  • One member states that a TENS unit is useful for sever pain as it confuses the signal that the pain takes to the brain and causes a distraction! 

NEXT MEETING:  Saturday, February 1st, 2014

TOPIC:  "What pieces of the Wellness Puzzle do we have some control over?" Share what you are doing that works for you and discover what you could be doing that may be helpful for you!"


January 4, 2014

TOPIC: How the new Health Care law is affecting us

  • One member has signed up for a new health care plan through the federal  Marketplace and noted an approximate 30% increase in the new plan from her old plan
  • One member describes her situation as “a disaster” getting a letter from her insurance carrier that her plan is going to be changing but as of yet not saying in what way
  • One member states that her monthly payment for health care purchased through the federal Marketplace will cost about the same after the subsidy.
  • This member has enrolled but has not received a bill yet and is assuming she is “enrolled” but does not have an insurance card yet
  • One member states that two of his family members have been canceled from the insurance plan that they had and is not sure what they will do as of yet
  • Handouts were given entitled “Affordable Care Act Answers” produced by CVS. Please see for the on-line version. Additional copies will be available at the next meeting and are available at the Green Brook CVS on Route 22 East back by the Pharmacy check out

The topic ended and the group had Open Forum

  • One member shared how her back “went out” with no apparent reason and that she had to go through three weeks of chiropractic adjustments several times per week to get back to where she was. (no pun intended!)
  • One member shared that she is in a “flare up” after an extremely stressful time in her life having just lost her mother a short time ago. Her mother had a period of illness leading up to her passing which was of course a lot on her! This member is now struggling with her symptoms. Members encouraged her to take the time her body needs to recover from that physically/mentally/emotionally stressful time. We keep her in our prayers!
  • Other members discussed issues going on in their life


 In keeping with the Topic for this meeting, I did some research on the website and will share what I learned.

This is just my interpretation and understanding, please remember that I am not an authority on this topic, I just reviewed the plans and am letting you know how I see it. Obviously questions should go directly to the staff. I hope this is helpful:

For a family of four the coverage is as follows: (assuming the yearly income is about $95,000 here in NJ). I used $95,000 because that is the cutoff for a subsidy. There is no subsidy offered for family income above $94,000.

A Bronze Plan would cost $1,281 per month with a $4,700 family deductible (there are individual deductibles that have to be met also) that has to be met before the benefits actually kick in. Once you meet your deductible, you will pay $50 for a doctor visit, $75 for a specialist, your generic prescriptions will cost you 50% and an ER visit will be at 50%. Other options offer (for a slightly higher monthly premium) a 50% coinsurance rather than a $50 copay. The significance here is that if your doctor charges $150 per visit, the $50 copay would be cheaper than 50% which would actually be $75.

Two issues arise here for me:

** If I chose this plan, or any plan that offers Generic Prescription coverage ONLY, I would not be able to afford my treatment! Xeljanz is a new medication and is only available in Brand Name. I’ve been told that the monthly cost of Xeljanz is similar to that of Humira and Enbrel, somewhere between $2,000 - $3,000 per month! Hello poor house! (or good-bye feeling better). I did not see any plan that mentioned Brand Name prescriptions! 

**Also, unless they consider a licensed Social Worker a “specialist” I do not see how I could see a therapist. There is no mention of mental health here in the “details” section of the website. Perhaps if you went through the “Application Process” there are more in-depth explanations. I would recommend knowing the answer to these questions before deciding!

If I enter the income to be only $50,000 for a family of 4 here in NJ, it shows an entitlement to a “tax credit” bringing the cost down to between $400 - $500 per month depending on the plan selected. However, my interpretation of a “tax credit” is that I would really pay the $1,281 per month (and please read the FINE PRINT under the monthly amount because it is there!) and then next year when I complete my taxes, I would get a “tax credit” on that form, and then hopefully get back a tidy sum of money on next year’s taxes in April which I presume they want you to keep and use to help pay the monthly premiums… not sure how that is helping me afford this policy for the first year. And please, if anyone has had this explained by government staff, please e-mail me with what you know.

Dental Plans: I also checked out the dental “only” plans, and they range from $125 - $182/month for a family of 4. There are no “family deductibles” to meet on any of the 5 plans to choose from, but there is an individual deductible ranging from $45 per person to about $75 per person. There is a $1,400 family maximum out-of-pocket expense on each of these plans which is nice to know! You would not have to pay for “routine” care after the individual deductible is met. Your cost for “Basic care” would be at 20% but “major” care is not covered on the cheaper plan! (Why do I have the feeling that the two root canals I endured this past year would be considered “major”?) Major care is included in the more expensive plans.

I would recommend knowing what the terms “routine” “basic” and “major” mean before making a decision on dental care. They didn’t use the term “preventative” which worries me.

So I did some math on the dental. If you pay $126 for 12 months that comes to $1,512. One root canal plus a “crown” on your tooth costs in that neighborhood. If you got the plan that did not cover “major” work and needed one root canal in that calendar year, then you would have paid over $3,000 for dental that year. If you go with a better plan that does cover “major work“ with a 50% coinsurance after the deductible is met, or for the “Cadillac” plan they would cover “major work” at 50% coinsurance without having to meet the individual deductible. That Cadillac plan is $182/month.

If you know already that you have a great deal of dental work that needs to be done and that it is not recommended to spread the work out over the next year or two, or, three, then you might benefit from one of these plans. You might be able to rationalize that the cost of your monthly premium is paid for by the 50% savings on the “major” work that you and your family need. Just food for thought here, some would argue that taking advantage of the Flexible Spending Account through their employer (if you are blessed enough to be employed or your spouse is employed) might be a cheaper option.

Catastrophic plans: These plans are only available to adults 29 years of age or younger who have a “hardship exception”. They cost around $350-$450 month. There is a deductible of $6,300 per individual ($12,700 per family) that has to be met before the policy kicks in, but once that is met, you can find a policy that has “no charge after deductible” for doctors visits, specialists, generic medications and ER visits. They all have an Out-of-pocket maximum of $12,700 for the year. That is an average of over $1,000 a month!

Here is something worth noting. Many of our population that would qualify for those Catastrophic Plans are only earning minimum wage. At $8.50/hr for a 40 hour work week minus taxes leaves them with approximately $912 disposable income for the month. If they need a Catastrophic plan you can see where it will cost them over 38% of their monthly income! If these young people are getting married and starting lives out there, how are they going to afford the $12,700 out-of-pocket? The $912 - $350 for the insurance leaves them $562 to work with for all of their other expenses. This is definitely fuel for our young people to either go to college or to learn a trade!

Better Plans:  Silver, Gold & Platinum:  There are several other options to choose from with slight differences. One gold plan is $1,692 monthly for a family of 4. It has a $4,000 family deductible (plus individual deductibles) with a Maximum Out-Of-Pocket expense of $9,300 and copays that are in effect without having to meet those deductibles! $15 for a doctor’s visit, $30 for a specialist, $10 for Generic Medications and $100 for ER visit.

This is just one example; for other options, please check out their website!

None of the plans are as good as the one I currently have and my current out of pocket maximum for the family is $7,000 and this is tough for us to do! I just hope the President’s promise that I can “keep my insurance plan if I like it” holds true!!!

I hope this summary was helpful to some of you.

See you at the next meeting, Saturday, January 18th, 2014 from 2pm - 3:30 pm in the Hamilton Conference Room at the Somerset Medical Center.