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Posted by on Jul 27, 2016 in General | 8 comments

5 things I want from a new biologic medication

5 things I want from a new biologic medication

Do you ever think about your next biologic rheumatoid arthritis medication? I am on my 6th biologic drug (Rituxan). It is working ok but it is not perfect.   If my history tells me anything, it is that the 6th will not be the last.  This is 6 Biologic medications in 16 years, so over the years I have averaged just under 3 years on each biologic medication. While that may sound like a lot of unnecessary switching, I need to preface that remark by noting that I used Remicade for 6 ½ years and Cimzia for 6 months, so there has been a  wide variety of success and failure over the years.

One thing switching so much does is to make you always think about what your next biologic medication will be.  When I had my first biologic medication, there were only two on the market and when my doctor asked what I preferred I had a simple answer, “give me the one that works”.  Of course, things are never that clear but I did not know that in 2000.  Today my list is a little bigger, and my expectations are greater.  So listen up Pharma here are 5 things I want out of my new biologic medication.

work-in-progress-24027_960_7201. I want my Biologic to work

Some things never change.  I still need my need biologic medication to work.  But you might be surprised that I am less worried about RA, than what I refer to as my 3rd autoimmune disease ankylosing spondylitis (AS).  AS is treated largely using pain and TNF inhibitor medications.  Four of the six medications I used were TNF inhibitors, so they were effective in combating both.  Because of my severe reaction to TNF inhibitors, I have been told I cannot use those anymore.  At the time I had to switch, my only option was Rituxan so I had little option but to use that medication.  Rituxan is an effective medication for RA but it does nothing to combat AS.  So I hope my next biologic medication works to combat both AS and RA.

2.  I want medication delivery options

I like using infusion delivery.  I realize I may be in the minority of those who prefer infusion; but since I have a port, infusions are convenient for me.  I also think that when my port stops working, I would like the option of using injections or even oral delivery.  I do not need the option to switch quickly or on the fly, but I do want the option to consider other delivery methods at some point in the future.  I also want to know whether some delivery options are more or less effective than others.  I realize I am suggesting that the pharmaceutical companies spend what is probably thought of as unnecessary money on medication development; but I hope they realize that we are not all the same, patients like options, and I would like this option.

pexels-photo-909113.  I want a test

I mentioned that I have been on six biologic medications.  Some have worked wonderfully others not so well. Each time one of these medications fails, two things happen.  First I feel awful and second I waste time and money.  There is no way that my insurance should pay for a medication if it does not work.  For most of these medications, we do not know if they will work before using them.  I realize medication providers are not responsible for predicting the usefulness of their medications for most drugs.  This is different, we have plenty of medications on the market, and they work in varying degrees for different people.   But I hope that pharmaceutical companies will help patients and doctors know if the next drug has a reasonable chance of working before it is prescribed.

And now I do a shout out to DNA Chip Research.  This company has developed a promising test that predicts the efficacy of Remicade, Actemra, and Orencia based on biologic markers.  Wouldn’t it be wonderful if all biologic medications had such a test?  If not a test, at least give us a free trial period of up to six months.

4.  I want a name that matters

Biologic medications are uniquely dissimilar.  There are no exact copies for these medications.  I want my next medication to have a unique name.  That way my doctor and I will know what worked and what failed.  In my opinion, we have a right to know if the Orencia we are taking is Orencia or a Biosimilar.  Biosimilar manufacturers could simply make this problem go away by pledging that the names used will be unique because there are no generic medications in this market space.

cant-pay-hospital-bill-ftr8595.  I want the medication to be cost effective.

No medication is effective if it is not cost effective.  Manufacturers pay an incredible price to bring these medications to market.   Even biosimilar manufacturers require an incredible investment.  I want, and as a community, we need any new medication to be profitable. Profitability is what keeps manufacturers in the game.

But I also need the medication to be affordable for both insurance companies and the average user. If medications are not affordable, we will never access them, and that will ultimately drive up the price of all biologic medications.

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rick

Take away for July 27, 2016signpost-take-care-of-childhood-around-the-school-1311194

  • Biologic medications are expensive
  • Not all biologic medications work equally
  • Names matter a lot
  • I want delivery options
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8 Comments

  1. I don’t have Ra, but even so understood all your points & I feel like I learnt more. Fingers crossed you get your message wishes.

    • Ashleigh, if these things ever happened, I will be shocked. Hope, though is a free commodity. 🙂

  2. All of these things sound very reasonable to me. I hope you get them all.

    • Karen, I imagine most of this woudl never occur, but one can hope.

  3. In the UK we forget how expensive these medications are.

    • Yes we get to see the bill. Or more like we have to see the bill. Yuck.

  4. I hear you, Rick. I too have RA and was on Enbrel a couple of months. I decided not to take it for a full course of 3 months because I was terrified of the side effects. Nevertheless, it worked wonders, did the trick and now my RA is so much better. I of course always know when the weather is going to change but other than that, I can handle it.

    If only something like this was available for type 2 diabetes and the neuropathy

    • Anna, Unforuntatley I doubt we get these five things, but darn wouldn’t it be nice if we did?

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