Thursday, April 27, 2017

The Case for Compassion

Ironically--fighting for healthcare may stress me to death. I'm struggling to stay positive, but it helps to know I'm not alone. My Mama Bear Defense System is humming at full throttle. I'm anxious, and frequently on the edge of tears... I'd love to just take a vacation and check out, but now is not the time to take our eyes off the ball in terms of advocating for healthcare policy for those with cystic fibrosis.

The CF community engaged with lawmakers in a formidable way in opposition to the GOP's American Health Care Act (AHCA), providing feedback about the inadequacies of the legislation with over 34K calls, texts, and emails tracked through the CF Foundation's advocacy platorm. These interactions MATTER. Because of the overwhelming public outcry to the bill, the Republican party wasn't able to unite in support, and the legislation never even saw the light of day for a vote in the House. Read about the original legislation and the impact it would have on those with CF here.  All of the concerns with the original legislation still remain. The cuts to Medicaid are still intact in this amended legislation, and would be devastating to millions.

ROUND 2

I was incredibly relieved when the AHCA was pulled from the House floor prior to a vote, but the GOP is geared up to take another shot at passing the AHCA with a new amendment. The amendment is designed to appeal to the two factions of the Republican Party that blocked the passage of the legislation the first time around.

1) Moderate Republicans represented primarily by "The Tuesday Group" in the House.
2) Ultra Conservative Rebulicans represented primarily by the House "Freedom Caucus."

Moderate Republicans from The Tuesday Group say they would have voted no on the legislation if they had the opportunity, due to the negative impact it would have on the people who vote for them.

The Freedom Caucus members, however, say they would have voted NO to the legislation for a very different reason. They want to pull the bill much further to the right--stripping away protections for people with pre-existing conditions. Their idea is to allow insurers to discriminate agains those with health conditions and charge them more $$$--which forces patients into state run high-risk pools (which have been shown over decades to be disastrously inadequate). The Freedom Caucus also wants to allow insurers to reduce their standard of "essential benefits" covered in plans.

THE AMENDMENT
The amendment to the AHCA makes the bill much MORE DANGEROUS for people with cystic fibrosis--or any other health condition for that matter.

"the latest proposal would allow states to apply for "limited waivers" that would undermine Obamacare's protections for pre-existing conditions. Under these waivers, states could opt out of Obamacare standards setting minimum benefits that health plans must offer and a requirement — called community rating — forbidding insurers from charging different prices to people based on health status."

The amendment to the AHCA would give states the ability to opt-out of Obamacare standards--which is exactly what my Congressman Raul Labrador--Leadership of the Freedom Caucus wants to see. In a Town Hall a few days ago, Rep. Labrador said:



For those with complex chronic health conditions like Cystic Fibrosis, health insurance must actually COVER HEALTH CARE to be effective.  Losing protections for those with pre-existing conditions and lowering the level of essential health benefits that insurers must cover may sound alright to Labrador on paper...but the policies would be "CATASTROPHIC" to actual people.  Labrador believes that people with health conditions should absolutely be forced to pay more for their insurance, and wants to bring back high-risk pools as the best method of dealing with the "less than healthy." There are decades of experience with high-risk pools to illustrate the inadequacy of this option. Returning to the discrimination of high-risk pools would be a huge step backward.

THE CASE FOR COMPASSION
I can argue about policy until I'm blue in the face. It is much much harder for me to argue about compassion. In discussing healthcare face-to-face with Congressman Labrador in early March, he spoke about his desire to make our healthcare system "fair" to the young healthy 20 year olds who he believes are paying "too much" for insurance. I completely understand that not everyone requires the same high standard of care that those with CF need, but I also think it is extremely narrow-sighted to design a healthcare system around the individuals that DON'T NEED IT as the #1 priority. The changes proposed in the latest amendment to the already awful AHCA would do the greatest harm to children, the disabled, and the elderly--the most vulnerable in our society. What can I say to convince Labrador (and others) that it is not OK to let people suffer and/or die because they can't access the care that they need? Are we plunging into a "survival of the fittest" scenario here in the US, where there is no room for compassion? Can we actually stomach systematic discrimination against those with serious health conditions in this nation and watch this tragedy unfold with eyes wide open? The United Nations has even stepped in to warn the administration that taking away healthcare from 30 million Americans without a suitable replacement would represent both a violation of human rights, as well as binding international conventions. 

Individuals with pre-existing conditions are people with families, talents, and dreams...just like my precious Brady. This legislation would put America behind nearly every other developed nation in the world in terms of healthcare for our citizens. We can do SO MUCH BETTER, and we must demand that Congress go back to the drawing board. Interestingly, Congress has decided to exempt themselves from the most dangerous aspects of this legislation. We mustn't let hypocrisy win. Please call your member of Congress today and ask them to OPPOSE the AHCA. The CFF's advocacy action center is the easiest possible way to make those connections with lawmakers. Don't wait--follow the link to take action NOW!

Sunday, January 8, 2017

The Policy Punchline

As National Advocacy Co-Chair for the Cystic Fibrosis Foundation (with my fabulous Co-Chair Melissa Shiffman), and Mother to a 9 year old living with cystic fibrosis, my level of anxiety has been elevated to some all new heights as the dismantling of our healthcare policy looms on the horizon. A second contributor to my overall mental health crisis is the INCREDIBLE LACK OF DETAIL about what will be proposed to replace the ACA. By all sources, the 1st order of business for the incoming administration will be the repeal of large portions of the Affordable Care Act ("Obamacare").  The ACA is an incredibly large and complex piece of legislation--for the purposes of this discussion, I will focus on the portions that most deeply impact those living with chronic diseases like cystic fibrosis. Whether or not healthcare policy is  really your cup of tea, it is going to be crucial for us to UNDERSTAND and FIGHT for access to affordable and adequate healthcare and medicine as new legislation is proposed in this new era. We certainly can't afford for our needs to be boiled down to "one-liners" or lost in a jumble of confusing rhetoric. Let's detail a few of the conversations we will need to be a part of to ensure that those with CF have access to adequate and affordable healthcare coverage, accredited CF care centers, and the most effective medications. I encourage you to read the CFF's message to the community following the election.

The Affordable Care Act ("Obamacare")

Certain portions of the ACA are highly relevent to promoting insurance coverage and high quality care for those with CF.

Lifetime and Annual Benefits Caps


Unless you have personally approached a lifetime or annual benefits cap (prior to the ACA), this issue may not be on your radar--BUT IT ABSOLUTELY SHOULD BE NOW. Before Obamacare, insurers set a cap on the amount of benefits they would pay out to an individual in a single calendar year, and also set a lifetime cap on the benefits paid on an individual plan. The annual caps varied from policy to policy, but the lifetime caps were typically set between $1-2 million. The ACA prohibited insurers from setting these annual and lifetime insurance caps. 

The policy that my family held prior to the ACA was a great plan purchased through my husband's employer with a $2 million dollar cap. Over the course of the last 8 years, successful research endeavors have changed the direction of treatment for CF. For example, the last time these caps were legally allowed, KALYDECO AND ORKAMBI DID NOT EXIST.  Those with CF undergoing transplant were likely to encounter these lifetime/annual caps at the most critical time in their care, and I hope that some who've experienced this will be kind enough to leave a comment about how this affected them. 

Today, we are fortunate enough to be in an era of greater understanding and treatment of the root cause of cystic fibrosis with small molecule gene modifiers. I am acutely aware that not everyone with CF is able to benefit from a drug like Kalydeco or Orkambi right now, but the drug development pipeline is absolutely packed with compounds that are poised to move to market in the coming years. Upcoming gene modifiers are anticipated to carry the same level of "ultra-premium pricing" as Kalydeco and Orkambi. Let's break down the math for someone like my 9 yr. old son Brady--who depends on Kalydeco (among many other prescriptions!) to stay healthy.

Monthly Rx of Kalydeco = $34K
$34K x 12 months = $408K annually 
$2,000,000 lifetime cap divided by $408K/year = 4.9 years of benefits before reaching cap

Effectively, reaching a lifetime max on benefits would take less than 5 years for someone like my son Brady with that single Rx. Kalydeco has been an incredible life changing drug for him since the day he began treatment (Feb. 10th, 2012--which equates to 4 years and 11 months of prescription benefits). Without the protections outlined in the ACA, he would MAX OUT HIS LIFETIME INSURANCE BENEFITS THIS MONTH (as we just tipped over the $2 million dollar mark) with that drug alone (not counting enzymes, antibiotics, breathing treatments, etc...)!!! I want to reiterate that Brady is 9 years old, and the prescriptions he takes have allowed him to live a full healthy life. Along the same lines, any annual caps (which would be much lower) placed on benefits could potentially be maxed out by filling a single month's worth of a drug like Kalydeco or Orkambi! 

Those needing an organ transplant or spending significant amounts of time hospitalized would also be deeply affected by these caps. How would you feel if your insurance benefits were simply cut-off when you reached their pre-determined max? What would you do? If that doesn't make you stop and think long and hard about the future of caring for cystic fibrosis--I don't know what will. Allowing lifetime and annual caps to return and be legally instituted by insurers will absolutely--no doubt about it--be a deadly disaster for those with chronic diseases like CF. Until we cure CF, the thought of "part-time" coverage because of annual caps, or maxing out your lifetime of benefits in just a few years is not a scenario we want to see become a reality. CF is a chronic disease that requires high quality chronic treatment. Allowing these caps to be put back into place will effectively flush our progress toward treatment of this disease down the toilet, because access to drugs and therapies will be governed by insurance caps on benefits. Let's be clear that simply gaining FDA approval for new incredible drugs does NOT GUARANTEE ACCESS. My hands are trembling just typing this...


Pre-existing Conditions

If you were born with cystic fibrosis--you are likely aware that you have what insurers call a "Pre-existing Condition"...but did you know that the Affordable Care Act provides 3 SEPARATE and EQUALLY IMPORTANT protections for those with pre-existing conditions?

1) Insurers cannot refuse sale of a policy to those with pre-existing conditions.
2) Insurers cannot charge these individuals more $$$ for their policy.
3) Insurers cannot "carve out" coverage for those with pre-existing conditions. (**For example, before the ACA, it was legal for an insurer to sell a policy to someone with CF, but exclude all coverage relating to the treatment of the disease).

I hope it is clear pre-existing protections #2 and #3 are just as vital as #1. What good would it do to have the legal option to purchase a health insurance plan with an astronomical price tag that is completely unaffordable? Along the same lines, what good is it to be able to purchase an insurance plan, if insurers are legally allowed to carve out (exclude) vital coverage for your cystic fibrosis/diabetes/cancer?  These 3 protections were designed to WORK TOGETHER to protect the most vulnerable in our society. I'm deeply concerned about the current political banter regarding pre-existing conditions because it usually sounds something like this...

"We want to keep the pre-existing part." 

Most of the time, this one-liner is in reference to protection #1--the legal right to purchase a plan. This is precisely the scenario where we can't let our needs get boiled down to simply having the ability to buy a policy. We also need that policy to be affordable, and to cover the actual treatment of that pre-existing condition in question. It is important that both consumers and lawmakers understand what is at stake here. https://www.healthcare.gov/coverage/pre-existing-conditions/

I've heard some discussion about the use of "high-risk pools," as a method of insuring those with pre-existing conditions after the repeal of the ACA. This is a strategy that has been utilized in the past (before the ACA), and was a costly disaster for people with cystic fibrosis. If you think premiums are high now...wait until you are dependent on the high-risk pool rates--they are the highest of all!!! High risk patients means high priced premiums--so high that they were completely out of range for many who needed it most. I would encourage those who experienced coverage under a "high-risk pool plan" prior to the ACA to leave a comment. Past experience with this strategy has proven that reducing coverage options to high-risk pools for those with pre-existing conditions was NOT AFFORDABLE, ADEQUATE, or ACCESSIBLE. The failure to provide good healthcare under high-risk pool plans was one of the very reasons why the pre-existing protections were included in the ACA. We absolutely don't want to go backward with our rights to access better coverage plans at lower rates than those offered to high-risk pools.

Ability to Remain on Parent's Insurance until age 26

This is much more straight forward than the pre-existing and benefits caps issues. The Affordable Care Act requires insurers to allow children to remain on a parent's plan during the years they are most likely to be still enrolled in college, or have reduced opportunities to obtain insurance through an employer. Prior to the ACA, the cutoff age was 19, or 22 for those enrolled full-time in college. For those with CF, this extension has been shown to be extremely beneficial to continuity and quality of coverage. Please refer to the fact sheet in the link below for further details on this provision.

Medicaid Eligibility

1/2 of children and 1/3 of adults with cystic fibrosis depend on Medicaid. The Affordable Care Act expanded Medicaid eligibility requirements--extending coverage to many who were previously not qualified. This eligibility expansion is one of the many provisions of Obamacare on the chopping block with the planned repeal of the ACA. Because Medicaid is utilized by such a large percentage of those with CF, it doesn't take a huge leap in logic to understand that reducing eligibilty would negatively impact the CF community. Those who qualify for Medicaid through the ACA's expanded criteria could face losing that coverage with repeal of this provision. This CF Foundation blog breaks down the details of the Medicaid expansion for those with CF. 

TAKE ACTION

If you or someone you love is living with cystic fibrosis or ANY OTHER CHRONIC DISEASE REQUIRING TREATMENT, I hope that you are convinced beyond a shadow of a doubt that changes to healthcare policy will have a personal impact. RIGHT NOW it is a critical time to be a part of healthcare policy discussions, and make our lawmakers aware of how these coverage issues will impact the CF community. PLEASE PLEASE PLEASE follow this link to tell Congress to protect your coverage.  You don't need to be a policy expert...the most powerful thing we can do is share personal experiences on why coverage is so vital for those with CF. We need your voice to ensure that healthcare policy changes don't become a painful "sucker punch" to our beloved community.

***For the record, I understand that high insurance premiums are a concern for many American families whether cystic fibrosis is part of the picture or not. I am not saying that this is not an important issue... but it is a FACT that rising premiums were an issue long before the ACA. I understand that the cost of premiums is prohibitive for many, and we aren't giving up on advocating for lower cost coverage!! The issues I've outlined in this blog, rather, represent the portions of the ACA that would be the most catastrophic for those with CF if repealed (which we anticipate early this year) without appropriate replacement.