Step Therapy First Fail

Have you guys heard of step therapy first fail? Well to make a long story short, it’s basically a rule that insurance companies practice when it comes to paying claims for treatment of patients with chronic illnesses. It basically requires a doctor to take the cheapest route when it comes to therapies for treating patients, and only upon the failure of that method can that patient be put on more expensive therapies. It is the reason why many of us are not getting the treatment that we deserve. I think this is outrageous! However, I do respect the rules of this site, and it was asked that we save our political views for the proper channels. But I’m not really taking a political stance, I just think its ridiculous. It’s not fair that the insurance companies are playing Russian Roulette with the chronically ill such as ourselves. I decided to sign the petition for my state for this legislature to be changed. Everyone should have a right to the care they need, no matter the cost. I’ve included some info if you live in NY and you’d like to sign the petition, or if you want to learn more about it. I hope I don’t ruffle any feathers, but I thought this was important info to share

Take a New York minute and make your NY voices heard on an important health care issue that impacts our ability to receive the most suitable treatments. Let your NYS Legislators know that Step Therapy/First Fail protocol delays patient access to medications, creates more obstacles for patients and physicians to overcome, denies continuity of care, and FAILS all of us.

That’s why I signed a petition to The New York State House and The New York State Senate.

Will you sign this petition? Click here:

Dear Risa,
You are so right about this, I know exactly what it is, it not only includes meds but testing as well.

I started my clinical trials for Psoriatic Arthritis with Sulfasalazine, at very end of the 3 month treatment, I was diagnosed by my GP with a stomach ulcer from this, then the Methotrexate, at the end of those 3 months I woke up one morning with so many blisters inside my mouth, I could not wear my dentures, and I would guess 20, 30, maybe 50 blisters all over my lips and above, below and on the sides of the outside of my mouth. Needless to say, "it flipped out' My Gp is thankfully 5 minutes away, always takes me if I need him, well he saw me and he flipped, said he cannot understand what I was even doing on a cancer drug, that I should be on Enbrel or Simponi. So he gave me valtrex and a teeny little tube of cream, at 25% just the cream was $50.00!

Had an appt with the Rheumy next week, he agreed it was from the meds, he also told me that Insurance dictates where he is able to start, and that unless there is no benefit or if drastic side effects occur, this is where we stay, with those meds.

So lets just say this, sometimes they make you so sick, the nausea is debilitating!! Then you are off to the next.

As for the testing, gall bladder bothered me for 20 years, nothing showed up on tests, surgeon told me he would bet everything it was my GB, would gladly take it out, but the operation then involved cutting you from the center front to the center of your back, said it was the most painful of all surgeries, and it would always hurt me, that they were working on developing a new method. So I waited and suffered.

20 years later starts up again, I had ultrasound after ultraxsound, upper and lower GIs regular X-rays. Finally was taken in from work one day so sick they thought I was having a heart attack, so keep me there admit me, heart monitor, next day insist I am going to get on a tread mill. I said I could not, this cardiologist would not let up, and I finally told him that if I was well enoughh to get on one of those I would still be at work!!! As I was walking out he agreed to do the lying down kind and just as I told him there was nothing wrong with my heart, that it was digestive. Out of immediate danger, sent home.

Finally got a hida scan, the GB is supposed to open and close as you would open and close the fingers of your hand, mine does not move at all, is DEAD. Now they are really flipping, the digestive Dr trying to get me in Emergency Surgery, afraid it will rupture or worse is gangrenous. He gets me in the day after, I said no, it's Easter, I am cooking for my family, having an egg hunt for the kids, we will do it Monday, then he flips, says OH NO! So I had it out, Husband said I was in there forever, Surgeon said he had an awful time, almost had to cut me round as the dead GB had adhered to the liver, could not understand why I was not as yellow as a daffodil. Took my liver about 2 years to heal, with taking a truck load of milk weed thistle.

GB was perfect size, no stones, no obstructions, just DEAD.

I live in MD, but I am all with you Risa, and will look for such a petition for our state, I know Renie will sign it when she comes on, she is upstate NY. I will give her an e-mail about it, she can even post it on other sites.

BTW, Renie is the Moderator from Fibromyalgia, since we are supposed to get the grandbaby this weekend, she will be here if you need her. She is a super great gal, you will all love her, she is helping, Terri and I and all of you with anything she can. I think it a good idea for us to be able to work more than one site. I also Moderate on Psoriatic Arthritis and Fibromyalgia.

I want to thank you all for welcoming me and accepting me here so graciously considering I do not have a full diagnosis for Lupus, but am finding that I am surely not the only one. It is a tough one to diagnose.

Risa, glad to see that you are not letting this go, we need more people like you. Of all who deserve the best meds, it is the young, especially the young parents. No offense to anyone else, I just have such a hard time accepting that the young are robbed of their health. I feel everyone deserves the best shot at living their young life to the fullest and healthiest!

I'm with you Risa,



Thanks for your support and your feedback. I realized this was going on in low income neighborhoods, like were I grew up. But now that I have Lupus, it’s more apparent, and it’s really sad for everyone. The tough thing about Lupus patients, not only are subjected to mediocre treatment, a lot of times we get brushed off, because our symptoms can be so vague, and the doctors don’t want to dig to deep and risk not getting paid. The first link talks a little about other states, and even gives some info on how to contact senators and congress in other states. If you google “step therapy first fail” and your state, you will probably find specific info for your state. You understand first hand how it feels for the doctors to play Roulette with your life. I’m going through it now too. Although Plaquenil is ok, I keep telling my doctor about my bladder symptoms, and because they don’t see anything, they send me home. I hope I’m not developing nephritis while the doctors play the waiting game. It’s hard to have Lupus at any age, I feel we all should get a fighting chance at a better quality of life. So I’m happy to speak up for those who can’t.

Dear Risa,

It seems as though this is the 'business as usual' requirement, someone is dictating to the Doctor how we should be cared for. I do happen to know that with Psoriatic Arthritis, if the MX can be tolerated, and has any benefit at all it is often times used with a biologic, as like a 'double shot' therapy. So I suppose it does have a protocol of sorts.

You are right, hard to have Lupus or any other chronic disease at any age, we all need care, good care, my heart goes out to all, but especially to the young. It's just me, I am so thankful that I had my health when younger. Hard enough to raise children when you are well, but so worth it either way! They are our reason to get up and keep getting up! Supposed to get my great grandson tomorrow, am so excited! I will surely be getting plenty of exercise! He is my best therapist, physical and emotional!

I will go back to the link, thank you again.


Actually the first step program has some value as a lot of people (both doctors and patients) want only the most expensive treatment and disregard the tried and true methods which may be safer as well as more cost effective The problem is that people without medical knowledge make this decision not the doctors that are trained to know what is best for YOU

Thanks for sharing that Poobie. That’s exactly it. If tried and true methods work then the practice works. But people who need non traditional care suffer, unless they are going to pay the money themselves. For example, wealthy people usually get top notch care because their insurance companies know they have deep pockets. A wealthy person with cancer will go to the best hospitals, and get the best coverage, because they can afford the co pays and deductibles. They can afford to continue paying for the expensive medicines. While for people on the low and middle class income status, they often can’t afford care, they rely on the insurance company. I think it’s all about money. The power should be with the physician to decide proper treatment, not the insurance company. This movement gives doctors that power back.

Hi Risa !
I'm signing this right away for NY. I worked for a Rheumatologist for many years, and this has been common practice for as far back as I can remember. The insurance companies forced us to eliminate all cheaper options before they would approve the more expensive drugs. When we would call for authorizations from the insurance companies, we had learned how to stretch the truth on some things, how to answer their questions's really horrible that we have to play their games, and waste so much time just to get to the drug that will help ...

Is it ok with you if I share this on some of the other groups? There is a lot of information for people in all states that might be helpful.
Full credit to you, of course !

Hi Renie! I don’t mind if you share this information. I wanted everyone to know about it. We should all share info that will keep us informed and help us grow as a whole. That’s what these discussions are all about! So thank you for wanted to spread the word!

Agreed Poobie, plus the Doc did say that they start with the most 'benign' of meds, though I wonder after my side effects, everyone is so unique as far as treatment! Good point!

poobie said:

Actually the first step program has some value as a lot of people (both doctors and patients) want only the most expensive treatment and disregard the tried and true methods which may be safer as well as more cost effective The problem is that people without medical knowledge make this decision not the doctors that are trained to know what is best for YOU

I just had a better look at the links, we can use this info for many things, for a long time to come, thank you Risa!

I’m glad you found the information useful. I’m always happy to share! Awareness is critical when it comes to Lupus or any illness for that matter. Feel free to pass it around.

I believe that Renie is planning to post it on the Fibromyalgia and Psoriatic Arthritis site!