American Healthcare Act

triples15

Super Moderator
Hi all,

Many of us are watching and waiting anxiously to see what becomes of the Affordable Care Act (ACA). As most probably know, today the proposed bill(s) to replace the ACA was rolled out. I was personally very relieved to see that some of the key provisions that protect those of us with CF were kept in place (at least in this draft). These include; Not being allowed to exclude for pre-existing conditions, no return of lifetime or annual caps, and continuing to allow children to stay on their parent's plan until age 26.

That being said, some of the changes, including changes to Medicaid, are concerning. Today the Cystic Fibrosis Foundation released the following statement:

March 7, 2017

Cystic Fibrosis Foundation Issues Statement on House Health Reform Bills
(Bethesda, MD) – The Cystic Fibrosis Foundation issued the following statement in response to the bills released by the House Energy and Commerce Committee and the House Committee on Ways and Means.
“The bills released by the two House committees this week fail to adequately protect people living with cystic fibrosis and place the lives of millions of Americans living with serious and chronic diseases at risk.
The CF community has come so far in the fight against this deadly disease, and it’s crucial that this progress is not jeopardized by inadequate, unaffordable health care coverage. At a time when advances in CF care is more promising than ever, these measures could restrict our community’s access to existing therapies as well as new treatments as they become available.
In particular, we are concerned that:

· The legislation would effectively eliminate Medicaid expansion and alter its financing structure in a way that would put coverage of new and innovative treatments at risk. Medicaid provides a critical source of health care coverage for 50 percent of children and one-third of adults with CF. We must preserve this safety net by retaining expanded eligibility and ensuring adequate funding for Medicaid.


The bills do not support an individual market that works well for people with intensive health care needs, including people with CF. By providing states with funds that could be used for a wide range of activities—including high risk pools, reinsurance, provider payments, and programs to promote access to preventive services—these bills offer no assurance that people with CF will be able to purchase an adequate, affordable plan in the individual insurance market, regardless of their state.

· The legislation inadequately supports young people with high health care needs, by basing financial assistance primarily on age rather than income. This could leave younger individuals with CF without enough support to purchase a plan that covers the breadth of their specialty care. This is particularly important for our community, as 75 percent of people with CF are under the age of 30.

We commend lawmakers for not exposing patients to higher premiums based on their health care status when they have a gap in coverage, as was put forward in other proposals. On behalf of the CF community, we urge members of Congress to protect and address the needs of people with cystic fibrosis, a life-threatening disease. We look forward to working with members of Congress as they continue to refine this legislation and will evaluate any bills through the lens of our policy principles."


I'm painfully aware that this is an inherently partisan issue, however, I am solely trying to focus on how these potential changes will affect us as CF patients. It's important to note that nothing is "in cement" yet, not even close. We will have to continue to follow the issue, and if you feel so inclined, contact your representatives and let them know which issues are important to you.

That's all for now, but please feel free to chime in with thoughts!

Take care everyone,
Autumn
 
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Simba15

Member
Hi all,

Many of us are watching and waiting anxiously to see what becomes of the Affordable Care Act (ACA). As most probably know, today the proposed bill(s) to replace the ACA was rolled out. I was personally very relieved to see that some of the key provisions that protect those of us with CF were kept in place (at least in this draft). These include; Not being allowed to exclude for pre-existing conditions, no return of lifetime or annual caps, and continuing to allow children to stay on their parent's plan until age 26.

That being said, some of the changes, including changes to Medicaid, are concerning. Today the Cystic Fibrosis Foundation released the following statement:

March 7, 2017

Cystic Fibrosis Foundation Issues Statement on House Health Reform Bills
(Bethesda, MD) – The Cystic Fibrosis Foundation issued the following statement in response to the bills released by the House Energy and Commerce Committee and the House Committee on Ways and Means.
“The bills released by the two House committees this week fail to adequately protect people living with cystic fibrosis and place the lives of millions of Americans living with serious and chronic diseases at risk.
The CF community has come so far in the fight against this deadly disease, and it’s crucial that this progress is not jeopardized by inadequate, unaffordable health care coverage. At a time when advances in CF care is more promising than ever, these measures could restrict our community’s access to existing therapies as well as new treatments as they become available.
In particular, we are concerned that:

· The legislation would effectively eliminate Medicaid expansion and alter its financing structure in a way that would put coverage of new and innovative treatments at risk. Medicaid provides a critical source of health care coverage for 50 percent of children and one-third of adults with CF. We must preserve this safety net by retaining expanded eligibility and ensuring adequate funding for Medicaid.


The bills do not support an individual market that works well for people with intensive health care needs, including people with CF. By providing states with funds that could be used for a wide range of activities—including high risk pools, reinsurance, provider payments, and programs to promote access to preventive services—these bills offer no assurance that people with CF will be able to purchase an adequate, affordable plan in the individual insurance market, regardless of their state.

· The legislation inadequately supports young people with high health care needs, by basing financial assistance primarily on age rather than income. This could leave younger individuals with CF without enough support to purchase a plan that covers the breadth of their specialty care. This is particularly important for our community, as 75 percent of people with CF are under the age of 30.

We commend lawmakers for not exposing patients to higher premiums based on their health care status when they have a gap in coverage, as was put forward in other proposals. On behalf of the CF community, we urge members of Congress to protect and address the needs of people with cystic fibrosis, a life-threatening disease. We look forward to working with members of Congress as they continue to refine this legislation and will evaluate any bills through the lens of our policy principles."


I'm painfully aware that this is an inherently partisan issue, however, I am solely trying to focus on how these potential changes will affect us as CF patients. It's important to note that nothing is "in cement" yet, not even close. We will have to continue to follow the issue, and if you feel so inclined, contact your representatives and let them know which issues are important to you.

That's all for now, but please feel free to chime in with thoughts!

Take care everyone,
Autumn

thank you this is so not good.
 

kgfrompa

New member
Thank you for posting I am so worried about caps and afraid of change being so sick is enough to think about ,
 

jricci

Super Moderator
CFF sponsoring Webinar on Health Care Reform today.
This Thursday, March 16 from 10:00 – 11:00 a.m. EST, the CF Foundation Public Policy department will host a special webinar update on health care reform. Please click here to register for this webinar. After registering, you will receive a confirmation email containing information about joining the webinar. While we hope you are able to join us live, we will record and circulate it for those unable to attend.
https://attendee.gotowebinar.com/register/1563423452556287745?splash=false
 

jricci

Super Moderator
Our Voice is Powerful


A note from Mary B. Dwight
SVP for Policy & Patient Assistance Programs
Cystic Fibrosis Foundation:

To our amazing CF Advocates,
Thank you for your tireless advocacy, your relentless phone calls, emails, tweets and meetings with your elected officials.
As you have likely heard by now, the House of Representatives did NOT vote on the American Health Care Act (AHCA) today, pulling the bill from consideration because they did not have the votes to pass it. They were unable to reach consensus within the Republican conference.
Your voice made a remarkable difference. We were so inspired to see your stories reaching elected officials, and helping those who support us make the case to their colleagues. We wanted to share just a few of these stories. Yesterday, our CEO Preston Campbell received a call from Senator Patty Murray (D-WA), the ranking Democrat on the Senate Health, Education, Labor and Pensions Committee. She called to thank the CF community for our leadership throughout this debate, and for the impact you had telling Congress you could not support the AHCA. Today, during the debate, the CF community and CFF was cited by several members from the floor of the House, and on social media.
We do not know what is next, and are hesitant to make predictions. We do know that we are not yet done, and that this fight is not over. Know that the CF Foundation will remain a tireless advocate for people with cystic fibrosis to ensure that the needs of our community will remain at the forefront of the debate as legislation is crafted. As always, we rely on you to carry this message to your elected officials. We will do all we can to keep you informed so you can take action.
Your voice is powerful.
Thank you for all you do.

Mary B. Dwight
SVP for Policy & Patient Assistance Programs
Cystic Fibrosis Foundation
 

LittleLab4CF

Super Moderator
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.

LL
 
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jricci

Super Moderator
From CFF:

Join us tomorrow night for a webinar on the American Health Care Act and how it could impact people living with cystic fibrosis. Learn how you can get involved and advocate for our community. The U.S. Senate is expected to vote on this legislation as soon as next week so we hope you will join us to learn more about making your voice heard.

What: Health Care Reform: All Hands on Deck
Who: Cystic Fibrosis Foundation
Date: Tuesday, June 20
Time: 6:30 – 7:30 P.M. ET

REGISTER » https://register.gotowebinar.com/re...=REGISTER »&utm_campaign=061917 webinar email

We encourage you to send your questions to publicpolicy@cff.org in advance. Participants will also have an opportunity to send in questions during the conversation. Thank you for continuing to fight for adequate, affordable, and available health coverage on behalf of people living with CF.
 

jricci

Super Moderator
I will be at work. Can I access this when it is over?

Hi Simba,
I just reached out to CFF to ask them, but haven't heard back yet. But their prior webinars have been recorded. I'd still register for it even if you can't make it, that way they will e-mail the link to the recording to those who registered but didn't attend. At least, that's how it's worked for other webinars thay they've sponsored. I'll let you know if I hear back and they tell me something different.
 

jricci

Super Moderator
Senate to release proposed health care bill tomorrow (thursday) with vote before 7/4

From CFRI:

URGENT CALL TO ACTION! SENATE TO RELEASE PROPOSED HEALTH CARE BILL TOMORROW (THURSDAY) WITH VOTE BEFORE JULY 4th BREAK! It appears that the proposed legislation will incorporate provisions that are detrimental to those with CF or any pre-existing condition. The return to high-risk pools, significant cuts to Medicaid funding, per capita caps on Medicaid funds to states, the inclusion of waivers related to Essential Health Benefits, higher rates for older enrollees, the replacement of insurance subsidies (based on income) with tax credits (based on age and peaking at $4,000 per year) will negatively impact many members of the CF community. It is estimated that with these changes, 23 million Americans will lose their health insurance by 2026. Please let your Senators know that the only acceptable replacement for the Affordable Care Act is one that maintains vital protections for those with pre-existing 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. To easily send an email to your Senator, click here:

https://secure3.convio.net/cfri/site/Advocacy?cmd=display&page=UserAction&id=207
 

triples15

Super Moderator
Grrr Jeana you're correct. :/ My original post is old (from early March) and was in reference to a draft of the House bill. You are correct that this Senate bill would allow for the return of lifetime/annual caps by allowing states to "opt out". I live in a very red state that will opt out the very second that option is available. :(

I also haven't seen what this new bill says about out-of-pocket maximums. Under the ACA my out-of-pocket is a true out-of-pocket that includes prescriptions. After I've met that OOPM I don't pay for anything. Pre ACA I continued to pay prescription copays after I met my out-of-pocket. That would absolutely cripple me now.

This bill is a disaster for those of us with CF. When lifetime/annual caps return there will be no point in Vertex drugs because no one will be able to take them. At 300K a year, we'd meet a lifetime cap of 1 or 2 million in a handful of years (or less) depending on other costs of our care (hospitalizations, procedures, medications etc).

I am feeling very defeated. I see no point in contacting my state representatives and they are straight party line voters and there is honestly zero chance my calls/letters will make any difference whatsoever. Maybe we can find out the representatives who are on the fence and contact them, even if they don't represent our state? I don't know anymore. I am so dang sick of worrying about it.
 

jricci

Super Moderator
Sorry about that--I probably should have started a new thread to avoid any confusion with the time lapse in between proposed bills.

Triples- I think it’s a great idea to find out who’s “on the fence”. Does anyone know this information? Please post if you find out. I’ll look into it too.

The CFF has outlined the many ways the legislation could potentially impact people with CF and their ability to receive adequate, affordable health insurance. Here’s the outlined list:
https://www.cff.org/News/News-Archi... many ways&utm_campaign=Advocacy email 062217


A personal story for those feeling defeated (which included me up until a few hours ago):
I just face-timed my 2 daughters who are in Washington D.C. for the CFF Teen Advocacy Day. Their energy was contagious. They had meetings with 5 representatives today, 3 Republicans and 2 Democrats. The first meeting didn’t go well and it was obvious that the representative already had his mind made up. My husband said my one daughter felt so frustrated after the first meeting that she became emotional and “fired up.” (The apple doesn’t fall far from the tree.) My husband gave them a pep talk. The next 2 meetings were also with Republicans and my daughters, feeling energized by the pep talk, felt like their discussion and sharing their story may make a difference on the vote---naivety and idealism of a 14 year old and a 16 year old who haven’t been jaded by the world yet? —maybe. But I think all of us can learn from her statement- “We can only hope that we made a difference. We did everything we could do.”
 
So here is a letter I drafted to email to representatives in reference to the caps. The only thing I am trying to verify is the cost of a hospital stay (that insurance covers, not my cost). I found a link to supposed costs and the amounts are laughable compared to what is truly being paid by insurance, although these might be out of pocket charges. I will have to read more closely. https://www.ncbi.nlm.nih.gov/m/pubmed/23538187/

I have Cystic Fibrosis, a pre-existing condition. Cystic Fibrosis is a genetic condition that primarily affects the respiratory and digestive systems. Despite medical obstacles, I attended college, received a teaching degree and spent twelve years teaching middle school. Although I loved what I did, I finally came to a point in my life that I medically could not continue teaching. I took a medical retirement and have a retirement insurance plan.
I have been carefully watching the status of the proposed health care plans as it has a tremendous affect on anyone with a pre-existing condition, in particular someone with a chronic condition that requires ongoing care.


While I am pleased to see that people like myself with a pre-existing condition will not be denied coverage and will not face higher premiums according to the Senate health care proposal, there is one key component that will keep most people with pre-existing conditions from keeping coverage with this plan, and that is allowing caps (annual and lifetime) to be reinstated.

Let's pretend for a moment that the lifetime maximum on an insurance policy is one million dollars. That might not sound bad until you begin looking at the medical costs for a person with Cystic Fibrosis (or even cancer). Just one of my medications costs $300,000 per year. One of my cheaper medications costs $21,000 per year. I take over 20 medications daily. I am in the hospital three times a year and most people with CF spend about two weeks in the hospital each time. The daily cost of a hospital room is about $10,000 per day. That adds up to about $420,000 per year for those hospitalizations. This is just a part of the medical expenses I will encounter each year. In addition, it is predicted that I will need a double-lung transplant within the next few years. That cost was estimated by UNOS (United Network for Organ Sharing) to be over $1,000,000. Easily, within one year, I will have reached the lifetime maximum on my insurance.


This is what people with pre-existing conditions face for the continuous care required daily to stay alive.



Please do not allow insurance companies to reinstate the annual and lifetime caps. This will literally cause the death of anyone that needs continuous medical care, like myself.


Thank you for your time,
Jeana Hayes

Input, changes??
 

jricci

Super Moderator
Jeana- Your letter is excellent. Thank you for writing it. The way you personalized it makes it powerful.

Autumn suggested writing to those Senators who were on the fence and may be more influenced by our letter writing.
Here are the names and contact information of those Senators that seem undecided. Please add to this if you feel like there are others. I just did a quick search for Senators that could represent a swing vote:

Nevada Sen. Dean Heller
https://www.heller.senate.gov/public/index.cfm/contact-form


Alaska Sen. Lisa Murkowski
https://www.murkowski.senate.gov/contact/email

Maine Sen. Susan Collins
https://www.collins.senate.gov/contact


Louisiana Sen. Bill Cassidy
https://www.cassidy.senate.gov/contact
 

triples15

Super Moderator
Thanks for the uplifting story about your daughters J! You must be one amazing family. How cool that they are there advocating for us.

Great list of those on the fence. It looks like Rob Portman (R) of Ohio is also undecided at this point. His Facebook post states that he needs to examine the bill, see the CBO score, and consider the effect it would have on his constituents. Just as with the representatives your daughter spoke to, he could just be blowing smoke, but it may be worth a message or call to him.

Also, RE: Susan Collins of Maine.. I just watched a Meet the Press interview with her where she stated her concerns with the bill, which were many. However, she didn't mention having an issue with return of lifetime/annual caps, so if anyone has any contact with her and/or lives in Maine it might be good to focus mostly on how those caps would be devastating to the CF population.
 
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