Category Archives: General

Living with Ovarian Cancer

Each year, about 20,000 women in the United States will be diagnosed with ovarian cancer.   Today Jill shares her ovarian cancer story and explains why access to affordable, meaningful health insurance is critical for people living with cancer.

My name is Jill and I am a bad-ass 4-year survivor of stage 4 serous epithelial ovarian cancer with 41 chemo sessions under my belt!  

Diagnosis and Early Treatment

In 2015 at age 54 I went to my regular gynecologic visit, and an abnormal pap smear eventually lead to a diagnosis of high-grade serous ovarian cancer.  I was told that this cancer was serious and aggressive.

After numerous procedures and tests, including two major surgeries, I learned that my cancer had spread to my liver and spleen.

Self-Advocacy

One of my early providers told me that “we might not be talking about a cure.”

While I understand that there is no cure for my condition, I also knew that this was not the right doctor for me. She seemed daunted and discouraged by treating me.  My situation was clearly outside of her comfort zone. I decided to seek different care. I didn’t want to work with a doctor who was afraid of my condition.

I took control of my care and found myself new providers and a clinical trial to participate in. I now have great confidence in and respect for my care team and the treatment I receive.

Disease Progression and Treatment

I’ve received various chemotherapy treatments since 2015.  From the effects of the drugs — fatigue, chemo brain — to the pain from ports, to developing a deep vein thrombosis (blood clot), chemo has been a taxing experience.

I look forward to the time when chemotherapy is looked upon the way we view leeches in medical care today.  I feel confident that there are better methods of treating cancer than sickening the host and I look forward to participating in the research to move us in that direction!

A low point for me was when tumor growth caused a bowel obstruction that left me hospitalized and with a nasogastric tube for a week, one of the most difficult and painful experiences of my ovarian cancer journey to date.

Access to Health Insurance

I have had no option but to work throughout my diagnosis and treatment in order to ensure ongoing access to health insurance.  I could choose to go on SSDI and purchase insurance on the exchange, but doing so will greatly diminish my standard of living and I would likely lose my house.

I’m not sure how long my employer will continue accommodating my dramatically reduced capacity. So I take each day as it comes at me. If I had guaranteed health insurance, it would be such an amazing relief and a big weight off my shoulders. As it is, I must balance my ability to earn a living with my medical needs and this is very difficult.

I appreciate the many ovarian and other cancer patients who have gone before me and helped treatment improve with side-effect reducing medications.  I am excited that there are potential new treatments. And I hope to see more options for affordable, non-employer sponsored health insurance. Fewer worries about access to coverage would make a big difference to people living with cancer.

If you are interested in the specifics of the course of Jill’s battle with ovarian cancer, see a long-form version of her story and her treatment here.

Chronic Care Collaborative Members the Colorado Ovarian Cancer Alliance and the American Cancer Society offer resources for people living with ovarian cancer and their families.

Living with ME

ME, or myalgic encephalomyelitis (also known as chronic fatigue syndrome), effects between 800,000 and 2.5 million Americans and is a debilitating multi-system illness that devastates a person’s mental and physical energy. People with ME who overexert themselves can get sicker for many days as a result. It leaves 75% unable to work or go to school even part time and 25% fully bedbound and housebound. There is no diagnostic test, cure or FDA approved treatment. ME can often last for decades.

MEAction of CO has set up a display at College Hill Library in Westminster this month that highlights what myalgic encephalomyelitis is and what it is like to live with it.  To learn more about living with ME please stop by the College Hill Library. To connect with the ME community in Colorado please check out meactionco.net.

 

Julie’s Story

We thought it was MS until the doctors  at the Anschutz clinic told us it not. We did more research and ME sounded right. It took quite a bit of education for her primary care physician in Elizabeth to learn ME, but she was willing to learn and diagnose when enough else had been ruled out.

 

 

“I enjopainting and drawing art, as well as gardening and tending to our chickens in Elizabeth, CO. These activities have become a relaxation tool since my diagnosis. I have a Master’s degree in Counseling Psychology and have spent most my life’s career working with Alzheimer’s patients. I had a private practice counseling individuals who had been adopted. I earned a Blackbelt in  Martial Arts while trying to get my misdiagnosis changed. Many of my symptoms were exacerbated by the four month intense training that involved extreme physical, mental and emotional strengthening. I miss all the activities I used to do with my family, such as riding horses, hiking, fishing, and canoeing”

2019 Blood Cancer Conference & Jennifer’s Story of Living with Blood Cancer

The Leukemia and Lymphoma Society invites you to learn more blood cancers at their 2019 Rocky Mountain Blood Cancer Conference on May 4 in Denver.  The conference is for patients, caregivers, and healthcare professionals.  Attendance is free and continuing education credits are offered to healthcare providers.  More information is available on the LLS website.

Leukemialymphomamyeloma and myelodysplastic syndromes (MDS) are types of cancer that can affect the bone marrow, the blood cells, the lymph nodes and other parts of the lymphatic system.  According to the Leukemia & Lymphoma Society, approximately every 3 minutes one person in the United States (US) is diagnosed with a blood cancer.

Here’s the story of one of the over one million Americans living with or in remission from blood cancer, and the impact building community at the Blood Cancer Conference had in her life.

Jennifer’s Story

Five years ago, after 6 months of unexplainable symptoms and mysterious “unrelated” infections, I was diagnosed with Acute Lymphoblastic Leukemia, PH+. I had no idea what Leukemia was and was about to get a crash course. I was told I was lucky to live through the night, and 2 blood transfusions later, began the build-up to tear-down process and six months of hospitals, chemotherapy, radiation, and a stem cell transplant that saved my life. I am now in full remission and blessed to be living a blessed life in Thornton with my husband, Joe, of 19 years, and son, John, who is a Freshman at Colorado State University studying Business.

I am honored to say I was a high school teacher and school district administrator for 20 years before my cancer diagnosis. I had the privilege of preparing thousands of students for the path ahead of them unknowingly reinforcing the very skills I would need to survive my own cancer path. I had to retire because my suppressed immune system couldn’t handle the school environment, and my new reality became seemingly a bigger challenge than the cancer was. I was lost. Education was all I knew, and I didn’t know what to do next. But I knew how to move forward. Just move.

The first thing I did was write a book. After my diagnosis, I began updating family and friends through a blog and receiving lovely comments in return. Those notes of love, encouragement, and prayers were essential to my state of mind and recovery. I found strength in them and wanted to share my experience with others, thinking they could benefit from my words finding hope in that they aren’t alone. I am volunteering my time and sharing my book with other patients diagnosed with leukemia, finding it helps me just as much as it helps them.

In the early years of my recovery, I constantly wished for support and resources to help me through my struggles. Because of the sheer nature of the Leukemia diagnosis and the isolation, help was hard to find. It wasn’t until I was deep into treatment for cGvHD that I learned about the Leukemia and Lymphoma Society and all they offer. I went to their Conference in Denver in 2016 and was hooked into so many amazing resources it was difficult to muddle through. What I unquestionably found was a support system I wanted to be apart of in all ways: patient, survivor, and volunteer.

To learn more about living with blood cancer, or to connect with other blood cancer survivors consider attending The Rocky Mountain Blood Cancer Conference on May 4 in Denver.

 

What happens when you can’t afford to manage your heart condition?

Dr. TianChu Shih is a cardiologist who practices in Lone Tree, Colorado.  Like many physicians, she has seen first hand the impact of lack of affordable health coverage and care.  She shared with the CCC three stories about patients whose health has been put in jeopardy because of unaffordable healthcare.  

While these are true stories of patients Dr. Shih has treated, names and identifying details have been changed to protect patient privacy.

First, Dr. Shih reminds us that health coverage doesn’t always mean meaningful access to healthcare.  While expanded Medicaid access makes a difference to many Coloradans, network adequacy in the program remains a problem:

Jane came in smiling and bubbling for her first annual physical. She was 21 years old and just got into nursing school. She told me that she “just learned how a physical is done and I want to have my complete physical done including a Pap smear.”

We had a wonderful time chatting and completed her physical including a Pap smear.

2 days later, her Pap result came back showing cervical cancer cells. I asked my medical assistant to call Jane and to refer her to our local OB/GYN group. Later on, my MA informed me that he notified Jane, but no OB/GYN locally would accept the referral because she had Medicaid. We couldn’t find a single OB/GYN that would see a patient on Medicaid.  We had to mail Jane her abnormal PAP result and ask her to call every OB/GYN on her own to find one who would accept her insurance.

I still wake up at night wondering, did Jane have her cervical cancer taken care of? Did this interfere with her nursing schooling?

Some patients struggle to find a physician who will accept their insurance, but others remain uninsured because they are without an affordable insurance option.  Going without insurance can have serious health consequences. Dr. Shih remembers stories of two uninsured patients with cardiac emergencies:

Tim

I was called by a local Family physician asking a same day work-in for a patient who is very sick.  Tim came into my office an hour later, shuffling gait, significant bilateral lower extremity swelling up to his thigh, could barely catch his breath. Tim was a contractor who had lost his business in the economic collapse and had been unable to afford insurance or healthcare.

During my physical examination, it was clear that he was in heart failure, and an echocardiogram confirmed my diagnosis. The problem was how to get Tim to get a cardiac catheterization then get a consult to see a cardiovascular surgeon to get a valve replacement before he dies. With his uninsured status, the only way I could was to send him to the ER of a local hospital. Luckily, I was able to talk to the ER attending and have Tim admitted to myself and get him through aortic valve replacement surgery.

He recovered and his heart function completely returned to normal.  Thankfully, he found a job and got health insurance 1.5 years later, but a few years ago he could have died simply because he did not have health insurance.

Mary

I was on call and Mary was airlifted into my hospital.

Through her tears, she said that she had a chronic heart condition.  She had been a very good patient and took all of her medications, and her doctor every few months. But then she lost her job and her health insurance. She could not pay for medications and feed her family, so she had stopped taking all her medicine a month before.

I asked feeling hopeless, “You stopped your warfarin?”  Warfarin prevents blood clots, and is crucial to patients who have a condition like Mary’s.  She replied, “Yes, all my medicine.”

I diagnosed Mary with a large blood clot near one of her heart valves.

I told her the importance of warfarin to manage her condition, and asked why she didn’t consult a doctor before she stopped.  She replied, “No one would talk to me because I lost my insurance.”

Mary was desperate to treat the clot and recover her health. She did not know that she could die without the warafin.  As I spoke with her, her voice getting softer and softer, she was taking more breaks between words.

We weren’t able to safely break up her clot, as doing so could have caused a massive stroke.

I still remember her cry for help, her tears, her regret of stopping warfarin.

Mary died that night after being forced to make a deadly decision to stop her prescription drugs in order to feed her family after losing her health insurance.

 

The CCC thanks Dr. Shih for sharing these on-the-ground impacts of unaffordable health coverage and care.   Ongoing access to medical care and prescription drugs means the difference between life and death for people with chronic disease.  

While there are more health coverage options today for people with chronic disease, we know that many Coloradans remain unable to afford their premiums or their out-of-pocket costs.  

As one way to move the state forward and provide more affordable health coverage options, the CCC supports HB19-1004, which studies the possibility of offering a public health insurance option for Coloradans to purchase.

 

Living with MS

CCC staff hears often from people faced with overwhelming medical expenses.  Below, Julie shares her story of living with MS and the high cost of health insurance premiums and prescription drugs.   The CCC supports efforts to lower prescription drug costs and health insurance premium expenses, including HB19-1168, which aims to lower the cost of health plans purchased on Colorado’s individual insurance market, like Julie’s plan.

Julie’s story

I woke up one morning and, while I was in the shower washing my hair, I noticed that my left hand was not making the same movements as my right hand. Over a period of days I lost the ability to type, button shirts, put earrings on, play my guitar – in essence I lost the ability to do anything that required fine motor skills with my left hand. To add to my frustration, I was exhausted from the moment I got up in the morning until I returned from work. I went from being a very healthy and competent woman to someone who could barely dress herself and make it to work on time. I was a high school art teacher at the time of my diagnosis; consequently, losing my fine motor skills also threatened my ability to keep my job.

I was diagnosed with MS within a month of my first attack and started on a disease modifying therapy right away. It’s difficult to explain the fear and worry that an MS diagnosis brings with it. You’re never sure what part of your body will be hit next and what abilities you might lose. In addition to the many day-to-day frustrations of living with MS, the physical pain that accompanies it is overwhelming. For example, one of the symptoms of my MS was extreme neuropathic pain in my left hand that was like holding on to an electric fence and not letting go. To this day, it is the worst pain I have ever dealt with (childbirth included).

That said, the pain, fear and confusion that come with MS, are eclipsed by worry when you realize how much the disease modifying therapy drugs cost. (The original drug I was on was $60,000.00 per year. The drug I am currently on is about $144,000.00 per year.) I was, very literally, stuck between a rock and a hard place-my neurological MS pain and the thought of having to pay for a disease modifying therapy to treat it.

I was fortunate that I had good health insurance through my employer when I was diagnosed with MS. I met my maximum out-of-pocket deductible just getting my diagnosis. I can’t imagine how hard it would have been to face life without good health insurance. This insurance allowed me to go to the best doctors and gave me the mental freedom to choose the medications that would most benefit me. (I should also add that I went to several doctors before I found the neurologist I am currently seeing. My experience helped me understand that not every neurologist is adept at diagnosing and adequately treating MS and its accompanying symptoms.)

I have since retired from my job and I am currently paying for private health insurance purchased through Connect for Health Colorado. The cost of my insurance is 1/5 of my current monthly income. Even though the cost of this insurance is oppressive, I couldn’t afford all of the medical expenses associated with MS without it. An estimate the out-of–pocket cost per year associated with managing my MS is about $149,200.00

Mid-Session Legislative Updates

The Colorado Legislature is starting to seriously address issues in health care affordability. We believe many of these measures will make a difference and impact your pocket book.

We encourage you to let your legislators know of your interest, support or health care story.

Along with an update on legislation of interest, tips are listed below to develop your story, find legislators and other interesting facts.

Did you know?
Outside of the Denver Metro area 62% of adults experience healthcare affordability issues. In the Denver area over 56% of adults have a similar affordability issue. (from Altarum’s Consumer Healthcare Experience State Survey February 2019) Those issues were primarily around:

High Premiums
Are you uninsured due to high premiums? Did you buy your insurance on the exchange, Connect or in the individual market? Are the premiums ‘too expensive’?  Reinsurance, a program created in HB19-1168, will make an impact on the cost of premiums in Colorado’s individual insurance market.

Share your story and/or support HB19-1168.

This past week at the House hearing on the Reinsurance bill Jo Hubchik spoke representing the MS Society and the Chronic Care Collaborative in support of the bill.  She made the following points:

  • When the ACA first passed reinsurance was included to provide stability to rates
  • However, it was not implemented and left some groups, particularly those outside of the metro area subject to large premium increases based on just a few large claims since Insurers recoup losses from previous year
  • The cost of insurance is already high particularly for those not eligible for tax assistance
  • Smaller employers and entrepreneurs are having the same struggles in providing health care
  • The need to lower costs is not limited to premiums. The costs for drugs, and specialists’ visits can be a burden to the family budget
  • Providing reinsurance protection would help with the premium part of the equation for insurance provided through the exchange
  • This is the first effort to resolve the rise in premium costs that does not look to the just raise the price to the consumer. Providers will share in the costs of funding the reinsurance dollars

The bill passed out of committee and on to the full House of Representatives.  It now needs our support in the Senate.

ACTION: Let your Representative know you support 1168 Reinsurance. Let us know if you are interested in testifying on the bill when it goes to the Senate.    If this bill is of interest to you, please email Allie.  allie.moore@ccc-co.org

Unexpected Medical Bills

One-third of privately insured Colorado Adults received a medical bill they were not expecting. (from Altarum’s Consumer Healthcare Experience State Survey February 2019).

There are two bills that attempt to address this issue. HB 19-1174 and SB 19-134

ACTION: Share your story and let your legislator know of your experience with an unexpected medical bill.  Email Allie if you have a story about an unexpected medical bill for assistance connecting with your legislator, allie.moore@ccc-co.org.

 OR if you need help with an insurance bill contact the Colorado Consumer Health Initative’s Consumer Assistance Program

 

Legislative Advocacy Tips:
The general website for the Colorado Legislature is https://leg.colorado.gov.

How do I find who my legislator is?
Many of us know who our federal congresspeople are, but have never reached out to our state senator and representative.  State lawmakers want to hear from you! On the Find my Legislator Page, type in your address and the map will provide you with your state senator and representative.

How do I contact my legislator?
Either by phone or email. The find my legislator page provides you with contact information.  Be sure to identify yourself as a constituent, lawmakers typically listen closely when people who live in their district raise issues.

How can I read a bill?
You can search on the Legislature’s website.  There is a button to find a bill. If you know the bill number, make sure you put in 19- before the number.

If I want to testify how do I do that? You don’t have to be in the Denver metro to testify. Many bills allow for remote testimony during a committee hearing, and we can help identify how to testify remotely. Email allie.moore@ccc-co.org for more information.

What are the good elements of a story? And an Ask to a legislator?
Read more on our Share Your Story page.

 

 

 

Congressional Diabetes Caucus Highlights Need and Ways to Bring Insulin Prices Down

Co-Chairs of the Congressional Diabetes Caucus Rep. Tom Reed (R-NY)  and Rep. Diana DeGette (D-CO) issued the following press release on November 1, 2018:

Washington, DC – The skyrocketing cost of insulin must be brought under control for the sake of millions of Americans who depend on it, and the U.S. government has tools at its disposal to help, the bipartisan Congressional Diabetes Caucus concluded in a report released today.

Caucus co-chairs Tom Reed (R-NY) and Diana DeGette (D-CO) completed the report after an inquiry lasting more than a year involving consultations with patients, health care providers, insulin makers, wholesalers, pharmacies, pharmacy benefit managers (PBMs) and health insurers.

“We care about the 7.5 million Americans who rely on insulin to manage their blood sugar levels and prevent debilitating complications every day,” Reed and DeGette said. “Many cannot live without it, but countless patients struggle to afford it. As their out-of-pocket costs continue to rise, the current system is unfairly putting insulin out of reach, placing millions of lives at risk.”

The price of insulin has doubled since 2012, after nearly tripling in the previous 10 years. A patient’s out-of-pocket insulin cost can exceed $300 per vial; some regularly use two or more vials per month. Patients have resorted to skipping doses, which can have dangerous, even fatal consequences.

In conducting their inquiry, Reed and DeGette found the insulin drug market is especially complicated due to interconnected issues, marked by an influx of upward price pressures with limited counterbalancing downward market forces.

The insulin market involves drug makers, wholesalers, pharmacies, PBMs and insurers. The drug’s list price is based on factors including manufacturers’ operational expenses, research and development costs, and marketing expenses. From there, the cost is affected by intermediaries in the supply chain and incentives that drive up the price further.

At the same time, relatively few downward market forces exist to keep the price under control: In the United States, insulin is manufactured by only three companies, while three large wholesalers control about 85 percent of the distribution market.

In their report, Reed and DeGette make 11 policy recommendations that include actions to increase the transparency of pricing, foster market competition, modify formulary usage and address patent reform.

The report can be found here.