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Posted on 24. September 2010

To the Naysayers of Healthcare Reform: Imagine Walking in the Shoes of a Patient with a Chronic Illness

By Ronale Tucker Rhodes, MS

Imagine being told that your insurance company was no longer going to cover the cost of your or a loved one’s immune globulin (IG) treatments? Either you’ve exceeded your yearly coverage limit, your son or daughter is getting ready to turn 18 and has no job with benefits, or you’ve just been sick too long, which means you’ve reached your lifetime cap - you’ve exceeded all available benefits.

Oh, right, I guess many of you reading this probably don’t have to imagine this, do you? And, if you have imagined it or are imagining it, it’s because of a genuine and legitimate fear — the fear that the cost of your medication is more precious than your life.

And while it’s hard for those in the IG community to imagine that such an injustice could actually be a reality in our society, try describing this scenario to the naysayers of healthcare reform who are completely unaware of the critical necessity of being treated with IG, the high cost of the treatments and the constant battle with insurance companies that many of you have to endure year after year just to stay alive. I have, and their answer is almost always: “I can’t imagine that can really be true!”

Well, imagine this: Fear less. No, not all of your problems with insurance coverage are going to go away with the passing of the new healthcare reform. But, there are many positive reforms that pertain specifically to you. Starting yesterday, September 23, here are some of the changes that took effect that are most important to you:

  • Health plans can no longer put lifetime limits on coverage.
  • “Essential benefits” (hospital services, drugs, emergency services and maternity and newborn care) offered through employer and individual plans can’t be capped any lower than $750,000 a year. That is set to increase each year until 2014, when the yearly cap is eliminated altogether.
  • Children (under 19 years of age) with pre-existing conditions can no longer be denied insurance coverage. This will become effective for adults, as well, no later than 2014.
  • Insurance coverage for young adults can be extended up to their 26th birthday through their parents’ insurance policy.

(Note: Even though the law went into effect September 23, don’t expect changes until January 1. This is because health plans don't have to implement the provisions until their next annual renewal date.)

Healthcare reform has been a long battle, an many naysayers have ignored the damaging effects to some, especially to chronically ill patients. How many naysayers of healthcare reform have you encountered, and what would you say to them now? I’d say, imagine this: When you or someone you love becomes chronically ill in need of a life-saving medication, be glad that healthcare reform passed, because now your and their life is more important than the cost of the care.

Categories: Need to Know

Comments (8) -

Susan RI
3:32 PM on Friday, September 24, 2010

I think in the beginning it was scary for everyone, and we have still yet to see the total picture of what HealthCare Reform has in store down the road,,, this is a very good start as far as I am concerned. I do believe though like myself another government run or controlled program could certainly have its issues.

I think that by the government taking control of what insurance companies are doing to subscribers is what really needed to happen. I don't believe that they have taken enough control over them. Here in RI we just recently got another increase in our premiums and co pays amounting to about another 2000.00 a year for me. It is terrible, and how can the RI Insurance Commissioners office allow this?

Insurance is truly going to be something that only wealthy people can afford.

6:15 PM on Friday, September 24, 2010

     According to comments I have read recently the insurance companies are currently working to transfer IVIG from medical coverage to pharmaceutical coverage which will mean they can rate it at any tier they wish.  This will have a catastrophic result for many IVIG patients who will not be able to afford the copay and out of pocket expenses.  Be aware that the insurance companies are NOT our friends; we cost them money.  My personal feeling is we need to abolish the for profit insurance companies and go to a universal health system which many more advanced countries already have in place.  (France is said to have the best health care in the world.)
     The bone chilling word for a lot of people is "socialism" and they speak as if it is a horror to be avoided at all costs, including possibly our lives.  Some of the people I hear ranting and railing loudest are people on Social Security who have Medicare.  I became so distressed by one individual's vitriol (in a public setting) that I asked him if he was willing to send his Social Security check back and pay out of pocket for his health care. The silence was deafening.
     Watch for continuing news concerning the insurance companies' collusion to limit our access to IVIG by making it unaffordable for many of us.

2:57 AM on Saturday, September 25, 2010

Thanks for this  great update.

My big fear (  in RI ) is that when I turn 65 next year, Medicare will be primary. I just switched to subq and am hoping what I hear is true  --  that subq is completely covered.

(Or worse as they just did to one of our over 65 RI patients,  lower the doasge.)

Right now BC is the LCD for Medicare and they cannot tell me yet -- if I can keep my Healthmate  as a primary. I would rather do that.

It will cost me $900 a month for Healthmate coverage at age 65- I am a retired teacher and have a group plan  but I need the Healthmate with the cost of a lot of other RX's. Right now I am paying $150 a month for Healthmate because I am not 65.

Right now, Medicare pays only 40% of IVIG and supplmentary insurance has to pick up the rest- according to RI Kent Infusion Center. That is not much on coverage.

And I understand that now the supplemental Plan 65 also run by BC pays the same amount as Medicare- 40%.

SO a person still has a 20% co pay per treatment,

As I said this is right now; as BC told me, they do not know what next year's rulings will be.


Linda Riley
3:27 PM on Sunday, September 26, 2010

Healthcare reform is way over due, and change is scary.  I don't think there is one person who would say we can go on like we have been, it's out of hand and pretty soon no one will be able to afford healthcare.  We are the richest country in the world yet we have the worst healthcare, what's wrong with this picture.

Medicine should not be for profit, how can anyone put a price tag on life!  That's what we have allowed the insurance companies to do, after all who do they have to answer to!  There are no rules and regulations, we are at their mercy.

I don't want to go on fighting to get my IGG every time they start to play games.  It's a challenge getting through each let alone have to fight for your medicine when you are sick, and then have them say you're not sick enough for them to pay, when you're sick you're sick, right?  It's crazy as far as I'm concerned.  Healthcare reform is needed now.

Universal healthcare, that sounds good to me, then everyone would have access to healthcare and everyone would be paying the same including those on Capitol Hill.

Susan RI
6:11 AM on Monday, September 27, 2010

In RI we are already dealing with IVIG being part of prescription program rather than in medical this I don't understand it is a biologic.... my co pay will be going up from 40 to 75 every 3 weeks,,,,

7:49 PM on Thursday, September 30, 2010

I have people in my own family who quite honestly I can't even speak to right now, because they won't shut up about how heathcare reform is nothing but an evil marxist plot to destroy "the best healthcare system in the world" (yeah, right) and how we're all gonna die waiting in line for services if the "government death panels" don't kill us off first. Seriously. These are people who have known about my situation for years, and still they spew this drivel. It's all I can do to keep from lashing out and saying something I might regret later.

I think it comes down to people who are just extremely fearful of change because they are ignorant and uneducated, and they're so wrapped up in their own lives and their own problems that they just don't give a "@#$%" about anyone else. It's a lot easier to blame the chronically ill for their own problems, or pretend we don't exist, then to be compassionate toward your fellow man. There is so little compassion left in our society...

I agree with the previous poster above who said that healthcare reform doesn't go far enough, but it's a start. Personally I'd like to see some kind of single-payer system (you know, like the rest of the civilized world has) or at least the abolishment of for-profit health insurance companies. I remain very concerned that not enough is being done to prevent chronic illness from being a ticket to poverty. Being born with a couple of scrambled-up genes that lead to PID or some other chronic illness should not mean that you have to struggle financially for the rest of your life. (I still remember the doctor who told my parents when I was a teenager, "You better be sure she marries well, she'll never be able to support herself.")

Patricia IN
6:01 PM on Thursday, January 31, 2013

I am 62 an I have Dermatomyositis, my insurance pays so poorly for my meds, I can not pay for them. Something has to change in this Country. If our President and elected people had the same insurance that we have to pay for and live with, they would do something about this health care. How many of our elected officals can not afford medications for there family?

Nynah Mason
6:54 AM on Friday, May 17, 2013

     Every time the Republicans try another go at derailing Obamacare they strengthen my resolve to *never* vote for a Republican again.  Thas crew of elephant a$$es should be using their time on behalf of the people.  They're not; they're doing the bidding of the monied sources who fund their campaigns.  Time for real changes in DC.  They should get the same healthcare we do.  We are their pawns in the game of making the rich richer at the expense of everyone else.  When the Revolution comes remember who predicted it.
     I sure know about those Fox news/Glenn Beck/Rush Lumbaugh drones who rant and rail.  I don't even know if they believe the manure they spout or they just sell their soul for the money.  Living a year in the shoes of anyone in the lower 95% income bracket
and having one or more serious chronic illnesses would give them a nightmare of a wake up call !!
     If you do some research you'll find, if I'm not mistaken, that the more "socialistic" countries aren't bombing anyone, don't have military bases everywhere in the world have better educational systems, far less crime, universal health care including mental  health, more paid vacation time, fewer homeless, lower infant mortality and an overall better quality of life.  I could handle that...especially given my age + CVID + mito.  'Scuse me,  kinda got on a rant here...

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