MEETING WITH REP. TOM O'HALLORAN

[Sukie427]

As all of you know, getting our specialty DMT and relapse medications to manage our MS is a financial burden which many of us cannot meet. As many of you know, I have begun a petition on change.org which urges Congress to amend the Social Security Act to allow patients on government-assisted RX plans, such as Medicare Part D and Medicaid, to receive the same direct financial assistance from the drug manufacturers to help defray the costs of these meds as do patients with commercial insurance. The link to the petition is below, for those of you who have neither seen nor signed it:

htttps://change.org/p/united-states-...

On Monday, October 23, 2017, I met with Arizona Congressman Tom O'Halloran to discuss this problem. I told him that I thought that it was a disgrace that people with rare diseases in the US are dying because of what appears to be an unintended consequence of a statute. He appeared to understand the issue, asked some questions as to costs, and also appeared to be interested in finding a resolution. I explained that the required statutory amendment would not cost the taxpayers one dime; would save Medicare and Medicaid dollars; and must be a part of any healthcare plan adopted by Congress. I also explained that this is not a political or partisan issue; that it reflects the needs of Americans across every spectrum, and should be offensive to nobody. I also advised him that I had attempted to contact the actual decision makers: Kevin Brady, Chair of the House Ways and Means Committee, Mike Enzi, Chair of the Senate Budget Committee, and Bernie Sanders, Ranking Member of the Senate Budget Committee, but had had no response. He requested that I send him those emails, which I agreed to do. The one thing that I did not feel good about was that he sort of left it as a "Don't call me, we'll call you" situation, but if I do not hear from him within three months, he WILL be getting a call from me for an update. Sometimes Ii think these people forget that they work for us, not the other way around, and if he thinks that I am a pest, well, that's just some kind of too bad. Wishing everyone good health, Sukie427

[jimeka]

Sukie427 a pat on the back is coming your way, well done, standing up and fighting for what is right. God willing you are successful. Love the picture. Just one question, where do you sit? Blessings Jimeka 🦋 🌈 🤗

[Sukie427 in reply to jimeka]

Hi, Jimeka. Mark Twain once wrote that there are two major days in your life, the first being day you're born and the second the day you find your purpose. I'm not going anywhere until the law gets changed. And don't worry about me. ..there's a very comfy dog bed on the floor in front of the sofas so I can still see the TV!

[erash]

👍👍👍

[CalfeeChick CommunityAmbassador]

I will add another reply later, but I am so proud of you. Perhaps we need to form a group or at least signed petition to make all of our representatives, local, state and US gov't aware of our battles, just to try and live a reasonable life!

[Sukie427 in reply to CalfeeChick]

Been thinking about forming a nonprofit to raise funds to lobby Congress, organizing local and national marches, demonstrations, sponsored walks etc. But baby steps first...everyone should contact their senators and congressional representative and make them aware of this issue.

[ssdw1958]

I am proud of you for taking a stand on this fight to have someone hear what is going on with the people who have these diseases. And the cost of these medicines the prices have gone through the roof.

I want to say thank you.

[Sukie427 in reply to ssdw1958]

No need for thanks....I have a passion foreally tough causes. The hard part is getting people to listen. But with help from the people who signed that petition and all affected people yelping at Congress we will get the law changed.

[Juleigh21]

Way to go Sukie427 !!! 😃You're a doer! LOVE THAT!

[Morllyn]

Right on Sukie427 !

[agapepilgrim]

Sukie427 wherr do I sign???? Capoxone been out there for 19 years and it’s still $3,000 month, but no co-pay for me low income BUT pharmaceuticals producing billionaires and charging Medicaid Medicare and Advantage companies!!! I called Tera and spoke my mind that it is a disgrace!

[Sukie427 in reply to agapepilgrim]

Good for you! If the link doesn't appear for you, just copy the address into your browser and it will take you to the petition.

[SueAB]

Sukie427, Great job! It seems like once you get on Medicare many rules change. My cousin in Ohio was flying to Chicago to be treated by a cancer treatment center that specialized in ovarian cancer treatment. This center paid for her plane and hotel until she went on Medicare and then was not allowed to . I have to wonder how many other things are out there like that?

[bxrmom]

Sukie427 Good job!! I tried to sign the petition but the link you posted with your message does not work so I was unable to sign.

Jessie

[Sukie427 in reply to bxrmom]

Hi, Jessie. Simply copy the address into your browser. It should take you right there. if not, message me and I will send it. And please don't forget to forward to your Social media contacts!

[bxrmom in reply to Sukie427]

Sukie427 I did copy/paste and received an error. Will message you for the info.

[punterstein]

Thank you for all you are doing!! A job well done!

[greaterexp]

Sukie427 , that’s taking the bull by the horns! It’s so easy to grumble, but you’re actively doing something to help yourself and potentially thousands of others!

Keep us updated, won’t you? I know I greatly fear the Medicare thing, which isn’t too far away!

[Brindisi1]

The price of dmt continues to rise exponentially. You don't want to hear my diatribe about the cost of my drug going up $592 a month this yr due to "competition" ( hear that Congress and president trump) it went up not down).

I have asked them in the course of negotiating Obamacare to be able to negotiate drug prices for those on medicare (which the powerful drug lobby dictated and our representatimes agreed).

Not only should you have help with costs but the costS are inflated with no rational explanation .I haven't seen any such amendments in the bills they have tried and failed to pass.

While I don't deny companies a just profit I do have problems with excessive profits that place burdens on people. My copaxone bill on medicare is $ 5692/month. I wish it was 3000. ( i dont have in exact figure in front of me but close) . It has passed it protection phase and the generic is not on my insurance formulary. Figure that.

Agree needs to be a concerted effort to let our congressmen know that the

Law needs to allow negotiation of drug prices for medicare. The drug companies won't go broke . Tell your representatives in washington.

Sorry my pet peeve!

Bravo for your efforts.

Bonnie

[ssdw1958 in reply to Brindisi1]

That is so sick that your medicine is that much money. What do you do you eat do you have Oil or do you have medicine that really #^*+|~if you know what I mean. And I really needed to say that. I know that this is not the same but one of my medicines went up to $85.00 from $50.00 then you put all my other meds on to that and it is %^*+#.

That s what I think.

[CalfeeChick CommunityAmbassador]

Here is an link I found and was able to sign, because it puts a cookie in the pc, it won't let me add the hubby. change.org/p/united-states-...

You might have to copy and paste into your internet browser