IG Living Blog

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Posted on 29. August 2014

Specialty Tiers and the Chronically Ill

By Abbie Cornett

As the patient advocate for IG Living magazine and a common variable immune deficiency (CVID) patient, I want to educate myself and our readers about the issues that affect access to care for patients with rare and chronic diseases. While I have been involved with the patient community for many years, the issues continue to change. Therefore, to learn how these issues evolved and how they impact our care is paramount. One of the best ways to keep in touch with the concerns of patients is to reach out to the different advocacy groups to find out how they are being impacted by current policy and what they are doing to protect their constituents.

With that goal in mind, I registered for and attended a webinar put on by the California Chronic Care Coalition (CCCC) on August 8. Titled “Ensuring People with High Risk Chronic Conditions/Diseases Have Access to Affordable Specialty Medications,” the webinar featured two nationally recognized speakers: Brenda Gleason, the president and founder of M2 Health Care, a recognized expert on healthcare policy and author of What We Don’t Want to Hear About Health Care, and Wayne Turner, staff attorney for the National Health Law Program.

Brenda Gleason discussed how the system of specialty tiers affects patients and their families by limiting a patient’s access to care and placing an undue financial burden on the chronically ill by switching patients from a system of copay to coinsurance. She explained that the insurance companies have created a tiered cost-sharing mechanism, and under this mechanism, health plans require beneficiaries to pay copayments or coinsurance, with rates varying based on the health plan’s drug tier. These tiers have increasing levels of cost sharing, which can result in the patient paying between 20 percent and 30 percent of the cost of the medication. The patients with the most expensive medications are placed in the highest tier.

The tiered system creates a barrier to care for patients with chronic diseases by making their medication prohibitively expensive — a policy that can be counterproductive to the goal of cost savings by forcing patients to be non-adherent to their prescribed therapy, leading to increases in hospitalizations. It also creates a potential issue of discrimination against the chronically ill under the Affordable Care Act (ACA). Wayne Turner discussed this potential for discrimination, as well as a complaint filed with the U.S. Department of Health and Human Services. Turner explained that the safeguards built into the ACA prohibit discrimination based on a pre-existing condition and/or health status. Qualified health plans are also prohibited from employing marketing practices or benefit designs that discourage enrollment.

The webinar was very educational. It explained some of the issues facing patients today, and it highlighted efforts of the advocacy groups trying to protect the chronically ill. It is important to remember that the best advocates for patients are the patients themselves. It is imperative that we keep informed on current issues that impact our access to healthcare and our quality of life.

What are your thoughts on this topic?


Comments (13) -

12:07 PM on Friday, August 29, 2014

This is one of the very reasons we have not changed jobs, even though we'd like to someday relocate. Many of the new positions have a tiered system for medications and we simply cannot afford them. Already under our existing plan we are being denied basic asthma inhalers and until drugs go generic sometimes we just go without or contact the pharmaceutical companies for coupons but it's not nearly enough.

Susan Taylor
12:53 PM on Friday, August 29, 2014

I was just notified by my retiree health care group that they are creating a "specialty tier" with a 10% copay amount. This is extremely scary to me. I didn't choose to have a rare disease which requires expensive medication yet I will be forced to pay hundreds of dollars more per month to be able to get my infusions which have kept me infection-free and, therefore alive!  We need to explore the option of seeing if there is a case to be made that this is discrimination because of a pre-existing condition.  Legal action is expensive and probably out of the range for individual patients to pay for.

7:58 AM on Saturday, August 30, 2014

This is exactly why I had to change jobs this year!  From a job that I LOVED to a job that is OK!  It isn't fair that chronically ill people with rare conditions must be forced to make those VERY difficult decisions.  But only 3.5 years and I can retire --- however I doubt that medicare will pay for my medications by the time I need it too!!

4:49 PM on Saturday, August 30, 2014

Trust me: tiers exist in retirement, too, and the donut hole will not fully close even under the ACA. It will merely shrink. However, Big Pharma always finds a way to carve their generous share out of our shrinking dollar.

"...[T]he best advocates for patients are the patients themselves." Therein lies the rub. I am probably not alone in barely being able to summon the energy to fight through each day. I do not know where I would find the energy to self-advocate. God bless the efforts of Mr. Turner, Ms. Gleason, and others who take up the cause.

Linda Thornrose
5:15 PM on Sunday, August 31, 2014

Reading this article and the comments brought something to my memory from when I worked as a practice manager for a multi-physician hematology/oncology group.  We had many hardship patients who needed help and I was blessed to dedicate staff to do nothing but help patients to get access to their meds.  At the time, there were several programs offered by Pharma to get free drugs to those who qualified, as well as other ways to get qualified for assistance programs.  I have never really heard of anyone on this website mentioning this, so thought I would mention it.  It doesn't hurt to ask and maybe there could be a resource available to help.  Just a suggestion.  I have been retired nearly 8 years, so things may have changed, but think it is worth a mention.  God bless all of you who share in this battle for our health.

Reid Carlson
8:12 PM on Sunday, August 31, 2014

Cobra Insurance paid for IVIG after appeal by BCBS even with pre authorization.in 2013 In January I changed to ACA with BCBS as of 9/1 no payments have been made for drug portion of IVIG infusion even though it is a plasma product and paid for in 2013. It is covered under Medicare. I stopped infusions in July By Neuro Dr for second opinion testing. I have been DX with SREAT. Non payment will bankrupt me and I will loose my home.

Pamela Neff
4:25 PM on Tuesday, September 09, 2014

I was dx with incurable lymphoma in 2008 and subsequently PID in 2011. I get Gamunex every 30 days. Are there any foundations/organizations that provide co-pay assistance?

Susan Taylor
3:02 PM on Wednesday, September 10, 2014

Check with the Immune Deficiency Foundation/www.primaryimmune.org  Also some of the specialty pharmacies that make/distribute globulin have hardship or assistance programs. I believe Medicaid and Medicare cover PID infusions, if you are on either of those. Best wishes.

patient advocate
1:40 PM on Thursday, September 11, 2014

Pamela, I will contact you directly regarding your questions.

Abbie Cornett
patient advocate Ig Living

1:08 AM on Saturday, September 13, 2014

I live in one of the states that has rejected the ACA outright, and, while we have the same insurance company as we have had throughout my husband's employment at this state's largest employer, since the ACA went into effect, our copays have more than doubled... as a result of increasing coinsurance and deductibles that are now four and a half times what they were.

We are in huge trouble. This company insists they are giving us the best deal in the country among private insurers - yet, in the past five years we have paid out *more* than my spouse's yearly salary - almost half of it being charged in the past 18 months.

What to do when I cannot work? I don't know. I just. Don't. Know.

This year they increased our deductible - everyone in this plan in the "company" actually - from $5,000 a year last year to $8,500 this year due to "increased costs." Because I  in the hospital so often - and with the pharmacy bills - that effectively means that that is the amount we pay out of pocket. On one income. Not including the items that *don't* count toward the deductible.

Stop the insanity. Please!

Mary Dawson
11:11 AM on Sunday, September 28, 2014

Medicaid won't pay for my ivig even though I have 3 paraneoplastic antibodies.  Are there any org or foundations that can help

Debbie Spencer
3:40 AM on Wednesday, January 06, 2016

I, too, live in a state that has totally rejected the ACA.  I have a Medicare Advantage plan and have not yet reached Medicare age requirement.  This year most of the hospitals dropped all insurance policies that were bought on the ACA marketplace.  Physicians did the same.  The worst part of this is that the main oncology treatment center dropped every policy bought through the ACA marketplace.  This does not bode well for many of us with autoimmune deficiency diseases since cancer frequently occurs as a side effect of the treatments or the diseases themselves.  I live within 5 miles of every kind of medical facility available to man, and yet with the changes in my state's insurance rules, I won't be able to use any of them.  I think the state of Texas is just trying to kill off the sickest people to save money.

Patty B
5:28 PM on Friday, June 23, 2017

I agree with Patty's comment (from 2014):

"I am probably not alone in barely being able to summon the energy to fight through each day. I do not know where I would find the energy to self-advocate."

Thank you for all you do to advocate for people like us!

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