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. 

https://www.hhs.gov/healthcare/about-the-law/benefit-limits/index.html

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.

https://www.whitehouse.gov/sites/default/files/rss_viewer/fact_sheet_young_adults_may10.pdf

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. 

https://www.cff.org/Living-with-CF/Navigating-Insurance/Medicaid/Medicaid-Eligibility-Requirements/

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.