American Healthcare Act


Also On the Fence:


Senator Lisa Murkowski: (202) 224-6665
Senator Dan Sullivan: (202) 224-3004
ARIZONASenator Jeff Flake: (202) 224-4521
ARKANSAS Senator Tom Cotton: (202) 224-2353
COLORADOSenator Cory Gardner: (202) 224-5941
LOUISIANASenator Bill Cassidy: (202) 224-5824
MAINE Senator Susan Collins: (202) 224-2523
NEVADA Senator Dean Heller: (202) 224-6244
OHIO Senator Rob Portman: (202) 224-3353
PENNSYLVANIA Senator Pat Toomey: (202) 224-4254
W. VIRGINIA Senator Shelley Moore Capito:
(202) 224-6472


I got the previous list from :

But I did call Senator Booker and Menendez yesterday...spoke to someone at Menendez office...and I asked him: "So how many calls are you getting on this healthcare bill? He replied "Oh a lot!" I said: 100s? thousands? millions? He quickly said thousands! Then I asked many were for the bill...he said "2"! But remember this is a blue I wonder how other states are responding?


New member
As an adult with cf, will I lose my insurance under the new health care bill? I have Children's special health care. I'm sorry if this sort of question was answered anywhere else. I have no idea about how most of this works and no idea who to ask. I turned to google to find a place where I might find answers for this worry.


Super Moderator
FYI, I called Senator Susan Collins yesterday to express my concerns about the BRCA. I focused on annual caps and Lifetime maximums and let the know it would be very harmful for CF. I spoke of the innovation and research of the Cystic Fibrosis Foundation; that 50 years ago my daughter would not be expected to see kindergarten and now she is a 14 year old girl entering high school with an academic record of straight A's; with a future which I expect her to be a highly intelligent and capable girl to go to college and be productive member of our society. We can not go backwards.

I hope every who is able calls, email, writes letter to their senators as well. It felt cathartic.

Yesterday Susan Collins said she would vote NO. I hope she sticks to it as I am sure things could change before the vote.


As an adult with cf, will I lose my insurance under the new health care bill? I have Children's special health care. I'm sorry if this sort of question was answered anywhere else. I have no idea about how most of this works and no idea who to ask. I turned to google to find a place where I might find answers for this worry.

You and I will go into a high risk pool. If you are paying for it yourself you will not be able to afford it and neither will I
Thank you Rebjane! Yesterday I sent my letter in to our state newspaper and I hope they publish it. I have already contacted my senators and called relatives and friends to ask them to contact their senators. If anyone wants to use and alter the letter I posted feel free. It is really easy to use the link Imogene provided and email your senators if you can't call.


Super Moderator
Hi again all!

I'm sorry for the tone of my previous post being negative/defeatist. I'm going to be honest, this whole issue has sent me into a tailspin. Since election night when the writing was on the wall that this is what we'd be up against my stress level has been through the roof. I have trouble sleeping and go through the days in a fog. Constantly checking my phone/laptop/iPad for news related to the healthcare bill. I used to look into my daughter's face and wonder how long I will be alive for her. Now I look into her face and that question has evolved into "how long would I be able to live without my medications or access to my doctors/hospital?" The answer is probably weeks, maybe months. I don't mean to sound dramatic, but after hitting a lifetime max that is literally what we would be up against. Or, if with the removal of the "essential health benefits" our plan could decide they don't want to cover our expensive CF meds. I'm assuming that would be pretty likely.

Anyway, I'm thankful to come here and find that I'm not alone in my worries. You ladies are all doing amazing with the calls, emails, and letters. I think I will, in fact, write to Sen. Ben Sasse of Nebraska (my state). He has not publicly stated his position, so I suppose it's worth a try. I'm also going to write some of those that are on the fence. To Jeana's point; I'm sure they do value the input of their own constituents far greater than those of folks not in their state. In fact, under normal circumstances I think they do disregard opinions of those that are not constituents. What I'm thinking on this one is that just the shear volume of calls, emails, letters etc. bombarding them is a good thing. I hope they see that overwhelmingly, people don't want this bill.

We went to a backyard pool party at a friend's home over the weekend. The topic of this health care bill came up and I went "Oh no, here we go. I'm going to have to decide whether to keep my mouth shut, or engage it and risk becoming too emotional." I think I've mentioned before that growing up in red state, my friends are overwhelmingly conservative Republican. As such, I assumed they all fully supported this bill. Anyway, as the conversation went on I did chime in on what the lifetime/annual caps would do to me personally. The focus seems to overwhelmingly be Medicaid and the assumption that everyone on Medicaid is a loser who is able bodied, should be working, and is just milking the system. I think most don't think about or see the fact that many (dare I say most?) on Medicaid are the elderly in assisted living/nursing homes and children and adults with complex medical conditions who physically cannot work. Anyway those were the 2 biggest points I made in response to tone of the conversation, so it gave me ideas on what to focus on in my calls/emails. My biggest takeaway from the conversation though is that literally everyone at the party, no matter what political affiliation, agreed that this bill is NOT the solution to the problems that the ACA is having. Not one person stated that they think it's a good piece of legislation.

It looks like it's possible the bill will not pass. However, I feel in my gut that after a few amendments folks will fall in line and vote for it. With that said, I think we should be hoping for and pushing for an amendment regarding lifetime/annual caps. That doesn't help with the Medicaid issues though. I don't know, I'm just thinking out loud here....

Keep up the good fight ladies!
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Super Moderator
triples15, Your concerns are my concerns. You are very eloquent and I think you are correct to focus on 2 points in regard to Medicaid; the elderly and adult with complex disease. I do think some are ignorant to what others go through; may because they have yet to walk in our shoes? I will keep being the voice for my daughter and for you! For if this bill passes Medicaid will be significantly decreased by the year 2026; just as my daughter gets close to not being covered by our private insurance. So either she will be healthy enough for a job with benefits or not...This is not the way a rich country treats our most vulnerable. Please do not feel defeated; CF is a rare disease but together we can use our collective voice. There is an organization called NORD National Organization of Rare Disorders. They have also been advocating for all rare disease. We all need to come together somehow.


Super Moderator
triples15 no need to apologize. It's difficult not to feel defeated and negative. One democratic senators summed it up perfectly: "It's a direct assault to the most vulnerable people in our society." The fact that this is even being contemplated makes you doubt the morality of our society.

If I had to choose the one thing in this world that makes me the most angry and upset it would be injustice. Like you, it's hard for me not to be swallowed up in the worrying. Writing is therapy for me. As someone said earlier, it can be cathartic. (As I'm sure some have noted in my long posts, often during bouts of insomnia). In this case, writing down everything you feel so passionately about can also be very productive and maybe even affect change. Pressing send on that e-mail feels empowering. It can't hurt to send it to senators other than the state you live in. You never know what might strike a chord with someone enough for them to stop and realize just how cruel this policy is. So keep pressing that send button!

Jeana Lynn, what a great idea to submit your letter to your state newspaper. I'm so glad they published it. :)

Here's a great article that someone sent me:


Well said, as always. This nightmare of a President needs to go along with his minions. This is an attack on the citizens of America. This is VERY Nazi like
I'm embarrassed to be a citizen of a Nation that is obsessed with material wealth and possessions to the exclusion of quality health care for all citizens. With our wealth and our democratic principals, universal health care should be a right. If it's to be an entitlement, I fear it will be at the cost of our humanity, our souls.

A single "smart bomb" exceeds the lifetime healthcare costs of a CF patient when we add the cost of transportation and delivery of this one device. We have a serious problem with our national priorities. Exhaustive studies have shown that CF has no political affinity, if our community is defunded or coverages​ are cut, political affiliation won't help.

Two great competing expenses, health and defense have more in common than one might imagine. In my lifetime I have worked with both industries and each are dedicated to the highest quality and greatest safety and efficacy. A President who knew better than anyone that we had become the world's swordsmith, warned us to move our economy away from a weapons industry or suffer for it. President Eisenhower knew how much of our industrial capacity had been devoted to the making of war. And government contracts are usually lucrative. I never lost money on one.

What this has to do with AHC, Medicare and Medicaid is the historical context of competing entities. If memory serves me correctly, the Nixon administration broke the Social Security piggy bank to continue funding of the Viet Nam war. It was news in the coming year as his world was unraveling. I cringe at terms like welfare and other pejorative labels like "socialized medicine".

Something I would love to see is what everyone is being paid to provide our medical care. Back in the 80's, getting an itemized bill from the doctor and hospital was straight forward. My wife is one of those people who looks at the restuarant bill, cash register receipt and checks credit card statements​.

I went to the ER with one of my many kidney stones back when an itemized bill was available. It was pretty routine, my wife dropped me off, they found the stone and I was admitted to control the pain and hopefully pass it, catching it in the process. My bill was padded, literally. Something like 24 of those huge bed pads they lay under a patient bleeding or other bodily fluids was just the top of the list, 3 intubation kits, countless heparin shunts and IV hardware.... It might have been the inventory for the entire ER shift. The bill went away but it wasn't too many years before you couldn't get a truly itemized bill from the hospital or doctor. The latest excuse is the bill is between insurance and the doctor or such.

My main curiosity is the amount doctors are paid for office visits​ under Medicare and Medicaid comparing PCPs and specialists​ payment compared to private insurance. After I went on Medicare and supplemental​ Anthem BCBS, my appointments​ shrunk from an average of 30 minutes to 15 minutes. A number of doctors are saying things about the demands in making a living and serving their patients. A specialist recently noted that Medicare pays so little, it was not worth serving them. Considering what is said about Medicaid and the difficulty in finding doctors who accept it I get the impression that we are NOT being served.

Healthcare has been a hot potato in politics and industry forever. After several administrations​ and​ thousands of dedicated​ people working for years to come up with a workable solution to universal health care, we have something in place. Not in the first hundred days, but 18 months we have it.

President Trump walked away from the failed replacement bill, but it easily could be defunded.

This is something that you and I need to write our elected officials over. We all must.


Patti Rowland

New member
It is my understanding that there is definitely a loop hole that would allow states to reinstate the lifetime caps. I found this by googling and read different sources.
Obamacare was not perfect but a step in the right direction. Its a shame that Congress will not work together to come up with a workable bill. And Trump's threats to kill Obamacare by cutting funding will help them "get their way" faster but will make Americans suffer in the process.
If the insurance companies will not play nice, get rid of them. Medicare for EVERYONE and just be done with it. This is so depressing that we are at this point yet again.
We should just be worrying about keeping ourselves or loved ones well and getting them the care they need without the added stress of the healthcare/insurance debacle.
Also, like it or not we are a global economy now and our businesses are trying to compete with foreign companies that do not have to provide their workers healthcare.
Google the salaries of the insurance exec's if you would like to see where a large chunk of the $ goes.....


Staff member
Got a letter from our CFF rep suggesting trying to meet up with our senators during the 4th of July break.... Here's a portion of it: Advocacy Action Items for the July 4[SUP]th[/SUP] recess:

  • Find your Senator at a 4[SUP]th[/SUP] of July parade, picnic, or community event! Ask them for a photo and use that opportunity to tell them why you need them to vote “no” on the Senate bill. Every interaction counts! If you get 30 seconds with your Senator, you should say:
    • My name is [your name] and I am your constituent. I want to express my extreme displeasure with the Senate health care bill and ask you to vote against it. My [brother/sister/friends/parent/etc.] has cystic fibrosis, and the Senate bill would make it difficult for [him/her/them] and other people with CF to access the life-saving treatments and care they need.
  • Sign up for Town Hall Project alerts so you are the first to know if your Senator is hosting a town hall while they are home.
  • Keep up the calls! Call 202-515-821, follow the prompts, and continue to tell your Senator why their bill is inadequate for people with CF.
  • Text the PROTECTCARE to 52886 to join our text alert program – share this opportunity far and wide


I still love my 5 calls I tested something I have been thinking about...Being so upset...I tried different zip codes...I did use Omaha because Senator sesse was on the news just supporting Repeal and Replace...This of course would be terrible for pre existing conditions and 20 million I called him saying "I know there are people with Cystic Fibrosis in the "BIG RED"...(that is how he answered the phone)...and I said we would lose our healthcare....and I said "I thought you were smarter than that!" I promise you I will video hubby Peter when he calls him because HE BOUGHT sesse's book and he wants his money back! 5calls app!



Just to let you know...I have been calling Senators. I say "I run a community of members with cystic fibrosis and there is much worry, concern, and sadness put out by this Senate bill. I am hoping they are not voting to throw half our members who are on Medicaid off of healthcare altogether and do away with the pre-existing condition safety clause in ObamaCare:

so far today: North Dakota Heidi Heidcamp...I think she is working to keep sounded that way from my Google search...and then John Hoeven June 22

I don't think his statement is hopeful,
I called Cory Booker and Menendez again just to thank them from my own state.
If you want me to call again for with your zip code...



Super Moderator
Just when we thought we could relax...

From CFRI:

Just when we thought we could relax, the Senate has announced that it will vote on an undetermined form of health care legislation as early as tomorrow! Of the four potential plans, two are the most likely to be considered: The Obamacare Repeal Reconciliation Act (ORRA) or the Better Care Reconciliation Act (BCRA). BOTH are extremely flawed, and risk leading to the loss of health insurance coverage for millions of Americans. We must let our Senators know that rushing to repeal and/or replace the Affordable Care Act (ACA) will bring harm to the CF community. Time is critical: They may vote tomorrow (Tuesday)!

Whether the Senate votes to enact the ORRA or BCRA, there is no good news for the cystic fibrosis and rare disease communities. ORRA would repeal the Affordable Care Act without a replacement. The Congressional Budget Office estimates that this bill would cause 32 million Americans to lose coverage.

The Better Care Reconciliation Act repeals and replaces the ACA, and the Congressional Budget Office estimates that the replacement will cause 22 million Americans to lose coverage. This bill would repeal the Medicaid expansion and dramatically cut the subsidies middle-income Americans receive in the private market. Remember, half the children with CF in the U.S. receive their care through Medicaid.

Your Senators must hear from you to understand that the only acceptable replacement for the Affordable Care Act is one that maintains vital protections for all, especially for those with conditions such as CF, and which enables those with CF and other at-risk populations to secure affordable health coverage.

CFRI’s Many Voices ~ One Voice Advocacy and Awareness Campaign needs your voice. It is critical that your representatives hear from you today!