How does one lobby?

I would like to lobby for permanent insulin prescriptions for people with chronic illness. Its not fair that type two's can buy long-term insulin without an Rx, but that we can't buy short term insulin without an Rx. Why is it like this? I have to get a new Rx almost every time I go to the pharmacy. We have sooooo many prescriptions. It leads to me being prevented from buying insulin, sometimes, when I need it. I never touch an Rx, so its difficult to keep track of the paperwork and leads to a bunch of extra work for the hospital, who has to continually write out new Rx's. Since there is no cure for diabetes, can't we just have a lifelong Rx for a medication that we need to live. I think that the paperwork gets all bound up, so often, that it can make it almost prohibitively difficult to get medication. That shouldn't be.

I'm not sure exactly what you are calling "Long Term" and "Short Term", but good old Regular R and NPH N is available OTC almost everywhere in the USA.

This is available because of lobbying efforts by the ADA back many decades ago.

By far the cheapest you will find in the US is "ReliOn" R and N at Wal-Mart.
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Interesting. I don't use either of those, but I could, in a pinch. Insurance prob wont cover without an Rx. Maybe that's the hold up. I'll ask them today.

While I fully agree with the inherent contradiction and absurdity of requiring a prescription for only fast acting insulins, your post raises some questions. Are you relying on a hospital for your primary care and why are you not getting refillable, long-term prescriptions? I fully agree that managing multiple prescriptions can be a burden, but there are some simple steps you can take that make this a lot easier than lobbying for a change in prescribing laws. Find a family Dr. or Endo who you trust with whom you can develop a long-term relationship and you should easily be able to get refills over the phone. Also, make sure they issue you a prescription with refills for as long as possible. Mine cover a year. Lastly, many major drugstore chains have apps for smartphones that let you easily manage and reorder all of your medications online.

Mine are about 3 months, I don't think Ive ever had one last longer than that. Often the pharmacy wants to contact for another Rx sooner than that, so I think there are bugs in their software. It takes eight days to get a clinic reply, sometimes 2 weeks, if the pharmacy goofs on the paperwork. I am often very low on insulin by the time I am able to fill a refill, so there is a very narrow window of time to make this transaction go through. I don't know where the paperwork is actually getting bogged down every time - the pharmacy or the hospital. But, it enters one of those paperwork black holes where it never comes out the other end successfully. Maybe I should just switch to R and NPH.

Yikes! That sounds horribly frustrating. I would find another Dr. who can give you 1 year prescriptions. I use Walgreens and have their app on my phone, but I know CVS and others do the same. I then have a handy overview of all my prescriptions which I can either set up for auto-refill or manually refill with the click of a button, even if the prescription is expired. If it is expired, Wallgreens contacts my Dr. for me and usually get a re-authorization the same day.

The other thing I do is to make sure my prescriptions are for more than I actually use. That way I can always backup in the fridge, just in case.

Good luck!

I haven't gotten a 1 year Rx in years, but now that I know they can exist, and are not just like unicorns, I'm gonna find one. I kinda think that my insurer controls the manner by with the Rxs are dolled out, not the Doc, but I'll look into it further.

Some insurers will only authorize a 30 day supply, but that's fine if you have a 1 year prescription, i.e., refills authorized for a year. I've never heard of an insurer only honoring a prescription for a fraction of the time its been issued, but it wouldn't surprise me. It seems that many have entire departments dedicated to making those of us with chronic conditions lives a bureaucratic hell. Good luck!

I use Express Scripts for my prescriptions. It couldn’t be easier. My Dr’s office calls it in for me annually (and, yes, I ask for a little more than I actually need so I have a built-in reserve), I get a 3-month supply four times a year, it comes right to my house, my credit card is on file to cover the copays. I literally don’t have to do anything. I get all my on-going prescriptions this way, BG strips too. The only time I need to go to the drug store is if one of us is sick and needs an antibiotic, which is rare. Again, this could not be easier!! Express Scripts isn’t the only such place to get this. I know there are many others. Please look into it.

In the US, anyone can lobby their elected representatives. If you are being paid to lobby, then you have to register at the federal level and in most states.

If you are a diabetic and want to advocate for yourself and other diabetic positions, there are lots of groups to be involved in, starting with Diabetes Advocates.

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And just to add to what Donna and Mike said. I believe group lobbying is regulated and is when you advocate on behalf of a corporation or set of stakeholders. As a US citizen and individual I think you can contact everyone in government freely and advocate personally without restriction. I think this can be a great way to have your voice heard, but a single voice can often be drowned out by the cacophony of other issues. That is why it is often better to develop a collective of aligned individuals in a grass roots effort to rise above the noise. And I would urge anyone seeking to advocate for an issue to learn about the issue and become the smartest person in the room on the issue. It will make your argument compelling and unquestionable.

I think there are many that believe that diabetes is a huge societal program. We should have a right to get access to insulin without being required to feed the pockets of corporations who add nothing. Access to over the counter human insulin saves untold lives in the US. There are important issues. Biosimilar insulins have now been developed that may enable cheaper modern analog insulins to be available. And I don't believe that it is right to repeatedly require the justification for insulin use or pumps. Jeez, once you are diabetic it is not like we are suddenly going to walk in one day cured.

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To be very clear for mohe, I get an annual prescription for a 90 day supply of X bottles of Humalin and with 3 refills. That gets me a years worth. As others have noted, I think, I just go online to reorder my script on file. My online site, Caremark, shows how many remaining refills I have and when I need a new script. My credit card # is also on file so no payment hassle. This is mail order, of course. Though I am gradually switching my 90 day scripts to my local CVS (part of Caremark) as it is less hassle than waiting for a sometimes delayed mail order. Plus, I am tired of getting my insulin in a foam cooler with 4 or 5 frozen packs that I then have to throw in the trash. The cold paks anyway. Sometimes there is an annual recycle pickup for foam items. All those cold paks are not needed to keep the insulin cool enough.

What bothers me also is that when I call for new pump supplies, I always have to give the date of my last doctor visit, for Medicare. Of course, I have usually forgotten to look it up ahead of time. I search my calendar for whichever dr was within the last 3 months--whether it was endo or intern. They don't ask for an endo specifically, so far. Though I know they want the "diabetes" doc. That is red tape that is meaningless. I do go q 3 months to my endo but anyone could lie if they didn't. I don't know if Medicare also cks with the endo.

Hey, theres a coupon in the Fall 2014 issue of Diabetes & You (the free magazine that they give out at Walgreens) for 5 free kwikpens of Humalog with a new Rx. With your advanced Rx skills, some of you might be able to swing this.

I bet you could lie, Nell. Thanks for the info!

hmmm. Thanks. Just thinking outloud...any chance ADA will go back to the hill and allow us to get lantus/Humalog/Novolg without an Rx. Why do you think that they did two very specific medications, like R and NPH, instead of 'insulin.' MAybe that was hard enough, in itself, but it should be easier if they have done it before, to do it again. ???

I, honestly, think its the computer system at Walgreens. Yesterday, they mentioned that the Rx was 'hidden' throughout multiple files that they had to search. But, I often wonder if the short Rx written out by the Doc, somehow correlate to some clinic requirement of how many endo appointments I have to have in a year. They want me in every 3 months, which I think is a lot. But, I have often wondered how one would buy insulin w/o seeing an endo. Are we, legally, required to see an endo once a year, in order to buy Lantus? I mean, I know we are in order to drive a car because they have to sign DMV paperwork, but otherwise?

I actually believe it isn't the FDA or insurers that restrict prescriptions to a year. I think that is state laws.

I agree it is absurd. The red tape of our health care system isn't personal but the whole scrip thing for a condition that will never go away is just another way we PWD's get mired in lame bureaucracy. It is further complicated by how insurance won't cover it unless a scrip is written. For our lifelong, permanent condition we should be issued a card that allows buying insulin and syringes without a scrip AND covered by insurance. This is how it would be if every one of our elected politicians had diabetes. I appreciate that my doc will write scrips to cover a year of supplies but he requires that I see him 2x a year. I prefer just one doc visit a year and thus my insurance is paying $300+ every year for an extra doc visit that adds no value to me.