Linda, Grandmother and MPN Patient pictured above with her granddaughter.

On Mother’s Day in 2011, I was out enjoying a band at a restaurant and while they were setting up their speakers, one blew right by my ear. I felt like I was underwater for an hour. Later that week I got a cold and had a loud heartbeat sound (pulsatile tinnitus) in my left ear. I then began a journey of symptoms that have not changed to this day. Early on I was diagnosed with various possibilities, Meniere’s Disease, MS, Vestibular Neuritis, Vestibular Migraine, maybe Lyme- so many ideas were entertained.  I tried working for years in a reclined chair at my job. If I got up quickly without thinking, I would often see black spots.  I would get odd brain fog at times and blamed it on the various drugs I was taking.  After getting bounced around from neurologists to ENTs to cardiologists, I was finally diagnosed with atypical Vestibular Migraine.

MPN Advocacy & Education International is gathering information on MPN patients who suffer from migraines, click here for more information.

In 2017, my platelets started climbing and my local neurologist, who had spent hours with me testing my blood pressure in different positions, felt I had a form of dysautonomia called POTs and needed more testing.  He repeated an electromyography (EMG) study which showed severe neuropathy in 2012 and it came back the same in 2018. Eventually, I got to the point that the feeling of fainting was so strong I couldn’t stand. I tried to hide it whenever I could because it was so inexplicable even to myself. I was anxious because I never knew when a symptom would occur when I had to be up for any length of time and I looked normal on the outside and was embarrassed. My family and friends were frustrated with me because I went from being an active mom and grandmother to being disabled and limited in what I could do. My local neurologist sent me to a hematologist who diagnosed me with ET, CALR 1 mutation.  He told me I would need a biopsy to confirm which I did at Sloan Kettering.,

As scary as it is to get diagnosed with a rare blood cancer, I felt slightly relieved that it might explain some of my symptoms and was told there was hope on the horizon with these blood cancers.  It seemed that my neurological symptoms could not all be explained by the MPN only.  and I probably have something else going on.  I noticed that is a common complexity of MPN patients, we usually have other things going on and have been to many types of specialists.  Being treated as a whole person can be challenging for us. I noticed that a lot of the symptoms were shared by the other groups I belonged to especially the Vestibular Migraine Group and Pots.  It occurred to me that if these different chronic illnesses could be studied together maybe drugs used to help one could be used to help another especially if you are in a “watch and wait” situation.  I’m sure this is being done all over the world.

I realized after joining some of the social media groups, that I am not alone in this feeling especially when it comes to the atypical migraines, brain fog and dizziness.  Being in a box, is not so important anymore.  Especially in the MPN world where you can have one type one day and potentially can learn it progressed or changed to another.  We are in this together. No matter what.  I’ve been lucky to have been referred to the Cleveland Clinic where I’m being evaluated by neurology and oncology to come up with an answer.  I’m inspired by that institution and the kindness of everyone from the shuttle drivers, to the technicians and doctors who work there.

If I had any advice to share it would be to be your own advocate. Not believing everything you read in the groups is also important because it may never be part of your story and there is so much being researched and studied.  If anything happens to be written that is inaccurate, you can put yourself in a state of fear even if you try to tell yourself otherwise.  Also, there are wonderful friendships to be made with people who know what you are going through.  I’m looking forward to finally meeting a fellow MPN patient, who I have been communicating with for a year at MPN Advocacy & Education International’s program in Cleveland this November. I’m realizing the importance of yoga and nutrition and I still try to keep busy for as long as I can stand before I give myself permission to rest when I can’t.  I’ve since learned that life is unpredictable and can change in a moment. All in all, I try to be optimistic and feel most people are kind, loving, and caring, but no one knows what you feel better than yourself.  I’ve also learned I have the best family, friends, and people in my life who provide love and support.

By Pam Trexel, American Cancer Society, Senior Vice President, Alliance Development and Philanthropy

Pam Trexel

Access to health care is a significant determinant in whether an individual diagnosed with cancer will survive. Uninsured individuals are more likely to be diagnosed with cancer at a later stage and more likely to die from the disease. The American Cancer Society Cancer Action Network (ACS CAN), the public policy arm of the American Cancer Society, believes all Americans should have access to affordable, quality health insurance.

Fortunately, in recent years there has been an increase in the number of Americans who have health insurance coverage. Since 2014, Americans have had access to comprehensive coverage that includes key consumer protections vitally important to cancer patients. These protections include: prohibiting insurance companies from denying coverage or charging more due to a consumer’s pre-existing conditions, restrictions against insurers imposing arbitrary caps on coverage, and a requirement that all insurance offered to individuals cover a broad set of benefits called essential health benefits.

Yet there are still challenges. Many cancer patients have difficulty finding specialists who participate in their insurance plan’s network, affording their prescription medications, and understanding their out-of-pocket expense liability. Recent regulatory and legislative approaches on both the federal and state levels have the potential to weaken current patient protections, segment the insurance market, allow for more insurance plans with inadequate coverage, and reduce access to healthcare for cancer patients and survivors.

Federal Activities

In 2018 the administration finalized a rule that would expand access to short-term, limited-duration (STLD) policies. The rule allows STLD products to be sold for a coverage period of up to 12 months and be renewed for three years. ACS CAN urged the administration to withdraw the rule due to concern that these policies are exempt from many of the key patient protections that ensure individuals with cancer and survivors have access to quality health care needed to treat their disease.

Additionally, the current administration has repeatedly reduced enrollment education and outreach funding,which limits efforts to inform consumers about open enrollment and plan options. Concerns remain about enrollment trends in future years and the abilities of non-governmental groups to continue outreach and enrollment efforts.

State Activities

Faced with uncertainty from the federal government, some states have implemented policies that seek to either strengthen or weaken the individual health insurance market.

Short-Term Limited-Duration Policies

As federal regulations try to expand access to STLD policies, some states are trying to prohibit or minimize their expansion. For example, New York state law permits the sale of short-term limited duration policies, but requires these plans abide by the consumer protections required for ACA-compliant plans.Other states are considering legislation that would limit STLD policies to a coverage period of less than three months without the option for renewal.

State Individual Mandates

The federal individual health insurance mandate penalty ended January 1, 2019. In response a few states have begun considering state-level individual mandates requiring state residents to maintain health insurance. Massachusetts has had a state individual insurance mandate since before the implementation of the ACA and never rescinded it.   New Jersey has also enacted legislation to impose an individual mandate requirement.

Non-Comprehensive Coverage

Following administrative actions encouraging creation of association health plans (AHPs) – plans wherein small businesses join together to purchase health coverage – some states are considering legislation that exempts AHPs from state regulation. These plans are already exempt from the important patient protections provided under the Affordable Care Act (ACA). ACS CAN is concerned these plans will be able to discriminate against people based on their health status and will syphon off younger, healthier people, leaving older and sicker people in the state’s individual market (which would increase premiums).

Utilization Management

Cancer patients often need to choose a health plan based, in part, on the plan’s prescription drug coverage. Utilization management programs are health insurer practices used to control spending.   These practices may include:  prior authorization or approval of a drug by the patient’s health insurer before a prescription can be filled; and step therapy which requires patients to try, and fail, on an insurer-chosen prescription drug before gaining access to the drug that was prescribed by their doctor but may be more expensive.  ACS CAN is concerned that if used inappropriately, utilization management may delay care or impede access to prescription drugs for cancer patients.  Several states are considering legislation to ensure that utilization management practices are timely, efficient, clearly described for both patients and doctors, and allow for appeals and exceptions when appropriate.

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