Chronic Care Collaborative

How to Hold a Fundraiser During a Pandemic

CCC members pivot in order to hold big annual fundraising events

 

As with many nonprofit organizations, the Alzheimer’s Association Colorado Chapter had to get creative this year when it came to their annual Walk to End Alzheimer’s fundraising event, due to Covid-19. Coming up this Saturday, September 19, the Denver Walk to End Alzheimer’s is billed as a “walk everywhere” event.

Davenport family did a 5.5 mile hike to end Alzheimer’s September 2020.

“It’s a DIY walk year,” explains Rebecca Engle, Director of the Denver Walk, “Instead of walking through a park for two miles together, you can hike a trail, climb a 14er, bike on a bike trail, or walk around your neighborhood. It’s what you make it with your family and friends or team members – whomever you feel comfortable with.” Even better, she says, you can do it anytime you want until the end of the year. It doesn’t have to be this Saturday. 

She and Senior Denver Walk Manager Ali Brieske said that earlier in the year when the pandemic first broke out, they kept a careful eye on the numbers in Colorado. They realized early on that they wouldn’t be able to hold the traditional Denver walk, which usually attracts about 10,000 to 12,000 participants in the fall. They held out hope that the other 12 Colorado walks, which tend to be smaller, might go on.

In early June, they received instructions from the home office that all in-person walks were canceled this year. As one of the top 10 Alzheimer’s walks nationwide, raising $1.28 million last year, the Denver office knew they had to pivot to plan a new walk experience quickly. 

“We don’t call it a virtual walk intentionally because it’s not just online. We tried to create an experience for people that would mimic our walk in the park, that would keep people safe and also allow people to celebrate the day because it is quite special,” explained Brieske.

On Walk Day this Saturday, there will be an online opening ceremony in the morning with their signature promise garden flower ceremony. There’s also an app that participants can download to track their steps and offer inspirational messages, some from celebrities. Again, you can watch the opening ceremony and use the app anytime between walk day and the end of the year. 

The Scleroderma Foundation Rocky Mountain Region also had to change up their annual fundraiser this year. Usually, Executive Director of the Rocky Mountain Scleroderma Foundation Maria Dastur says, the home office provides guidelines for all walks nationwide. With the pandemic, the Rocky Mountain chapter was able to get creative and target its active community. In June, they held the Choose Your Own Adventure: Stepping Out to Cure Scleroderma virtual fundraiser.

Scleroderma Foundation’s “Most Creative Fundraiser” award winner, Team Sal’s Pals

Also, instead of a one day walk, they decided to make it a two-month event because Dastur didn’t think a one-day event would raise enough money. Last year, the walks in Denver and Fort Collins, combined, raised $54,191, which makes up about a third of their operating budget.

She encouraged the Scleroderma community to get creative and not give up on fundraising. And creative is what they got. Some did a bike ride while others hit a treadmill. One person did a music video and sent it to anyone who donated. Another fundraiser hosted an improv night.

In the end, Dastur said that they surpassed what they made last year. “The Denver event almost matched 2019 levels, but it netted 27% more with the decreased expenses.” Her advice to other organizations: focus on the top fundraising teams. Help them in any way you can. 

The Juvenile Diabetes Research Foundation (JDRF) Rocky Mountain Chapter also had to figure out how to continue the tradition of their annual fundraising walk without jeopardizing their community’s health. Laura Rosseisen, Executive Director of JDRF, Rocky Mountain Chapter, said that they found out in late May that they couldn’t hold an in-person walk, which they’ve done for about 30 years.

Laura Rosseisen’s triathlon

Instead, the JDRF is holding a nationwide One Walk event, instead of individual walks. This event is also a multi-month event, ending November 1. “The November date is actually a celebration of sorts with people celebrating what they’ve done,” Rosseisen explains. “We have a robust virtual event planned with a virtual expo area and many things that you would experience in person.”

People are also getting creative with their fundraising efforts for the JDRF event. Some teams are setting a number of miles to walk between the time they registered and November 1. Others are pledging to walk on 10 different days, and others are picking a specific date to walk. Three different teams raised over $50,000, combined, by making masks and giving one to anyone who donated. 

In addition to the JDRF One Walk, they also hold a cycling program, which, again, this year looks a little different than past events. Called the JDRF My Ride, participants can ride any way they’d like – indoors, outdoors, with friends, up a mountain, on a bike path, etc. 

For her ride, Rosseisen did a triathlon September 2 to raise funds for JDRF. “I’m a person who likes to swim, run, and ride my bike. I decided this year that instead of tackling a big ride, which I’ve done in the past, I wanted to do something different.”

All three organizations’ representatives were happy that they could pivot and continue their annual big fundraising events, even though they looked different this year. The one thing that they missed, though, was the gathering of the community. 

“We’ll probably continue to have a virtual component,” says Dastur. “But, these in-person events are the once a year that our community comes together.”

 

Important links:

Denver’s Alzheimer’s Walk to End Alzheimer’s 

One Walk JDRF, Denver

My Ride JDRF

Scleroderma Foundation Rocky Mountain Chapter

Everyone Counts: Census 2020

Have you filled out the 2020 Census? As of August 7, 2020, 66.55 percent of Colorado households have done so. While that number is better than the national rate, which is 63 percent, it’s still below the national final mail-in rate of the 2010 Census, which was 74 percent, as well as the 2010 Colorado self-response rate. On the plus side, did you know that two Colorado cities were in the top 10 of response rates a decade ago, with Centennial at 83 percent and Arvada at 82 percent! Way to go CO!

You may be thinking, why should I fill this out? What is this headcount all about? For starters, the Census is mandated in our constitution. Article 1, Section 2, and Title 13 of the United States Code mandates the count of all persons living in the US, including all ages, races, ethnic groups, citizens, and noncitizens, every 10 years. Fortunately, the same law also requires that your answers be kept confidential.

Most importantly, if your household does not respond, your community may get shortchanged. The population numbers reported in the Census help direct hundreds of billions of dollars in government funds to local communities for schools, roads, hospitals, and other public services, including nonprofits. The information is also used to determine the number of seats each state has in Congress and also to draw congressional and state legislative districts.

The message to fill out your Census questionnaire either by mail, phone, or online is more urgent now more than ever. The US Census Bureau recently announced that the deadline to respond has been moved up to September 30 – a month earlier than previously set.

If your household has already filled out the Census, please check with family members, friends or neighbors to make sure they fill it out too. If you are a caregiver, it is especially important to make sure to check with those you are caring for to see if they need a reminder or assistance.

Because it’s vital to get as complete a headcount as possible, census takers will be sent out to knock on doors of households that have not responded starting August 11. They will continue to hit every door that has not responded until September 30. This task is daunting given the condensed timeline and the number of households that still have not responded. 

The good news is that there is still time to respond, and the Census is easier to fill out than ever this year. For the first time, you have the ability to respond online, in addition to telephone (844-330-2020) and mail. Plus, it’s very quick to fill out! Most people can complete the census questions about 5 minutes. 

If you have any questions about the U.S. Census, just text 303-622-5881 or visit Together We Count for 24/7 assistance chat services. To respond by phone in over 13 languages, click here.

Can we count on you? 

2020 State Legislative Victories 

It goes without saying the 2020 legislative session in Colorado, like all across the country, was unpredictable and unprecedented due to COVID-19. Thanks to strong legislative leadership and an incredible community of advocacy partners however, there were still many victories for Coloradans living with chronic conditions.

SB20-030 – Consumer Protections for Utility Customers: Concerning increased consumer protections for customers of investor-owned utilities, and, in connection therewith, making an appropriation. The CCC thanks Senate President Garcia, Sen. Rodriguez, and Rep. Esgar for sponsoring this bill, which the CCC supported and testified in the House Transportation and Energy Committee. SB20-030 raises the income threshold for eligibility for a medical exemption from tiered electricity rates from 250% of the federal poverty level (FPL) to 400% of the FPL. The CCC administers the Colorado Medical Exemption Program (CMEP) on behalf of Xcel Energy and Black Hills Energy and are pleased that more people will now qualify for this important energy assistance program.

SB20-163 – School Entry Immunization: Concerning the modernization of the school entry immunization process, and, in connection therewith, making an appropriation. The CCC supported this bill and joined a broad coalition called Colorado Vaccinates and thanks the bill sponsors Rep. Mullica, Rep. Roberts, Sen. Priola, and Sen. Gonzales.

SB20-212 – Reimbursement For Telehealth Services: Concerning reimbursement for health care services provided through telehealth, and, in connection therewith, making an appropriation. This bill will help make permanent some of the COVID-19 public health orders related to telehealth. The CCC was one of several advocacy organizations involved in stakeholder meetings with the Division of Insurance leading up to this bill. The CCC thanks bill sponsors Sen. Winter, Sen. Tate, Rep. Soper, and Rep. Lontine.

SB20-215 – Health Insurance Affordability Enterprise – This legislation will create an enterprise to capture fees already being paid by insurance carriers and direct them where they’ll do the most good for consumers. Without impacting the state budget it will:

  1. Make ongoing funding available for Colorado’s successful reinsurance program;
  2. Make insurance more affordable for individual-market consumers that don’t benefit from reinsurance, namely lower income Coloradans that receive federal subsidies under the ACA;
  3. Create affordable health insurance options for people left out of the Affordable Care Act, including individuals in the “family glitch” and people excluded from coverage because of their immigration status.

The CCC supported SB20-215 and thanks many community partners who spearheaded this late bill including Colorado Consumer Health Initative, Colorado Center for Law and Policy and the Children’s Campaign. Thank you to bill sponsors Sen. Moreno, Sen. Donovan, Rep. Kennedy and Rep. McClusky. Seeking board members!

HB20-1232 – Equity in Access to Clinical Trials in Medicaid: Concerning equity in access to clinical trials for individuals enrolled in the medical assistance program. In 2009, the CCC supported Representative Primavera’s bill to increase access to clinical trials. The CCC supported this bill and testified in the House Health and Insurance Committee. This model legislation which was originally focused on cancer, was broadened to include many other serious diseases so more people can experience the hope and treatment options provided by clinical trials. HB20-1232 will eliminate barriers to participating in clinical trials for patients on Medicaid, by covering routine costs while they are in the trial, such as doctors appointments and lab tests. These routine costs are required already to be covered in the private market and in Medicare. Thank you to the Colorado Cancer Caucus for working closely with patients and providers on this bill and to the sponsors Sen. Todd, Rep. Michaelson Jenet, and Rep. Liston.

HB20-1236 – Health Care Coverage Easy Enrollment Program. The bill creates the Colorado affordable health care coverage easy enrollment program for the purpose of leveraging the tax filing process to connect uninsured Coloradans to free or subsidized health care coverage. The program will allow Coloradans to ask on their state income tax returns for the Colorado health benefit exchange to assess whether uninsured household members are potentially eligible for free or subsidized health care coverage. If the tax filer requests that the eligibility of uninsured household members be assessed under the program, the tax filer will receive information about coverage options and assistance with enrollment. The CCC supported HB20-1236 and thanks the Colorado Center for Law and Policy and bill sponsors Rep. Lontine, Rep. Will, Sen. Tate, and Sen. Bridges. Seeking board members!

HB20-1420 – Adjust Tax Expenditures For State Education Fund: Concerning the adjustment of certain state tax expenditures in order to allocate additional revenues to the state education fund, and, in connection therewith, making an appropriation. The CCC joined a very broad coalition of supporters who recognized the need for more revenue to help offset the huge budget hole largely due to COVID-19. Thank you to sponsors Rep. Sirota, Rep. Gray, Sen. Moreno, and Sen. Hansen.

Chronic Disease Day 2020

Supporting Coloradans Living with Neurodegenerative Diseases During COVID-19

Everyone is at risk of developing COVID-19. But, those with chronic health conditions such as diabetes and dementia have a higher chance of developing severe symptoms – and of dying from the virus. According to the CDC, people with underlying medical conditions have 12 times the risk of being hospitalized and six times the risk of dying than healthy people.

In Colorado, 61.5 percent of adults have at least one chronic condition, and 35.2 percent of adults have two or more chronic conditions. This prevalence increases from 40.7 percent among those 18 to 24 years old to 89.6 percent among those 65 or older. The risk of developing severe symptoms from COVID-19 increases with age, which makes this older group with at least one chronic condition especially vulnerable to this novel virus.

As more businesses open and more employees return to work, people with chronic health conditions face unique challenges in how to conduct their lives while protecting their health. Knowing you’re at a higher risk of developing severe symptoms from a rapidly spreading virus can be stressful and frightening. Some of the best ways to manage stress and fear in the face of uncertainty are to educate yourself, be prepared, and stay positive. It is also important to stay connected with medical providers and caregivers, even if it is through telemedicine or other virtual ways to communicate.

 

Chronic Disease Day

July 10 is Chronic Disease Day, which is a day dedicated to bringing together local governments, patient advocacy groups, and local communities to share actionable resources and support the chronic disease community. In honor of Chronic Disease Day, the Chronic Care Collaborative (CCC) would like to thank the Adira Foundation for their generous grant to help those living with neurodegenerative diseases in Colorado. Thanks to the COVID-19 Fast Track Grant from the Adira Foundation, the CCC and four of its member organizations were able to help their constituents navigate the unique physical and emotional issues that have arisen during this unprecedented time.

The Adira Foundation is a national organization dedicated to improving the lives of those with neurodegenerative diseases. The CCC greatly respects and appreciates the collaborative nature of this foundation and it’s focus on local, community organizations. In Colorado, the CCC and Adira partnered with The Rocky Mountain MS Center; the Parkinson Association of the Rockies; the ALS Association Rocky Mountain Chapter; and the Alzheimer’s Association, Colorado Chapter.

 

Helping those with Chronic Conditions during COVID-19

Thanks to the Adira Foundation grant, the Rocky Mountain MS Center was able to provide virtual and online education and support to individuals and families living with multiple sclerosis during the COVID-19 pandemic. Some of the wonderful projects they were able to accomplish include an online education page, transforming their bi-annual Education Summit into a live stream virtual program, virtual counseling sessions, and providing food assistance.

The Alzheimer’s Association used funds to support a 24/7 hotline that provided support and answered questions on various issues related to COVID-19. Caregivers in Colorado, especially, needed guidance on how to ensure the physical safety of their loved ones and themselves, and handle those diagnosed who were exhibiting more severe issues due to extended isolation.

The Parkinson Association of the Rockies was able to help people with necessities such as groceries, medications, and Uber rides to doctor’s appointments. Similarly, the ALS Association’s Rocky Mountain Chapter has been able to offer direct financial assistance for people living with ALS or their caregivers through their Quality of Life grant program during the pandemic.

Furthermore, thanks to the Adira Foundation, the CCC was able to leverage its generous grant to obtain a state-sponsored COVID-19 Relief grant. The CCC looks forward to further helping people with chronic conditions maintain their health and not get derailed by this hard-to-contain virus.

 

 

 

You May Be Eligible For Lower Energy Rates Through CMEP!

Do I Qualify for the Colorado Medical Exemption Program (CMEP)?

For Current Xcel Energy Customers:

For medical reasons, you may need to use more electricity in the summer months to help manage your health condition. However, if you use more than 606 kilowatt hours of power per month in the summer (June through September) and make 250% or below of the federal poverty level, you are eligible for a reduced summer rate through CMEP.

The deadline to apply is May 1st. Your rates will be reduced from June-September.

The two-page application can be found here.

You must sign and complete the patient form (front page) and have your health care provider sign and complete the Health Care Provider Certification Form (back page).

Fax your completed application to Chronic Care Collaborative at 303-955-7538 or mail to:

CCC-Energy Program
PO Box 461657
Aurora, CO 80015-9998

If you have any questions or need help call 303-993-5056.

 

For Current Black Hills Energy Customers:

Black Hills Energy offers a lower rate year-round if you are below 250% of the federal poverty level and have a medical need.

The two page application can be found here. There is no deadline for Black Hills Energy customers.

To apply, sign and complete the patient form (front page) and have your health care provider sign and complete the Health Care Provider Certification Form (back page). Black Hills customers must include proof of income.

Fax your completed application to Chronic Care Collaborative at 303-955-7538 or mail to:

CCC-Energy Program
PO Box 461657
Aurora, CO 80015-9998

If you have any questions or need help call 303-993-5056.

Frequently Asked Questions:

  • What should I do if I need help, have questions, or would like a mailed copy of the application?
    • Call Sabrina at 303-993-5056
  • Can the application be filled out electronically?
    • Yes
  • Which medical conditions qualify?
    • Medical conditions that require higher electric energy usage include life support equipment in your home. Some examples include home dialysis, oxygen and CPAP machines, and electric wheelchairs.
    • Chronic diseases could include multiple sclerosis, lupus, or epilepsy.
    • The prescribed use of medications which keep your body temperature high could also qualify.
    • Any condition your health care provider certifies that you require higher electric usage due to your health status or condition.
  • Will the energy company know my medical condition or income?
    • NO! The Chronic Care Collaborative is a nonprofit which administers the program and certifies you as eligible. Neither energy company has your private information.
  • What is 250% of the federal poverty level?

  • How do rates change for Xcel customers through CMEP?
    • Many customers pay higher electric rates in the summer. They are charged a standard rate for the first 500 kilowatt hours of electricity, and a higher rate for anything over 500 kilowatt hours in one billing period. This tiered rate can make summer bills much higher, largely if power use is over 606 kilowatt hours per month. The Colorado Medical Exemption Program offers those who qualify a single, reduced rate for all electricity used from June through September. The program not only lowers billing rates, but also removes the Tier 2 rate for using more electricity. Standard rates return October 1. For more information, please see the Xcel fact sheet.
  • How do rates change for Black Hills customers through CMEP?
    • Customers enrolled in CMEP will pay a flat rate for electricity. The rate is $0.11094 per kilowatt-hour of electricity used and will be in effect year-round. Participants will continue to pay for all other riders and charges on their Black Hills Energy bill, including the monthly customer charge.
  • Do I need to provide proof of income with my application?
    • Yes for Black Hills Energy. No for Xcel Energy.

Finding Common Ground To Help People Living With Neurodegenerative Diseases

Each Spring, the Chronic Care Collaborative celebrates Chronic Disease Awareness Day at the Colorado State Capitol when people living with chronic conditions are united in their message of how critical improved affordability and access in health care are for our community. It’s an inspiring reminder that while our individual conditions and how they impact us individually are very different, our common goals unify us. It’s also powerful for those who aren’t living with a chronic disease to recognize that at least one in four in Colorado are currently living with a chronic condition. 

At Adira Foundation, we recognize the essential purpose of the CCC; a format for a voice, a place for listening and exchange, and an opportunity to join forces to respond to neurodegenerative diseases like MS, ALS, Alzheimer’s, Parkinson’s Disease, and Huntington’s Disease. Of course, the Chronic Care Collaborative represents other chronic illnesses, yet where Adira and the group unit is among these five disease states.

On a recent visit to Denver, CEO and Founder of Adira Foundation, Greg Smiley met with Chronic Care Collaborative members who are association leaders of the five neurodegenerative disease states listed above. Not surprisingly, we heard an exchange that resonates with all; a desire to see where the trajectory can change for people living with neurodegenerative diseases and for those who care for them. What we learned is the diseases are different, yet there are consistent experiences for the diagnosed person; greater services are needed in home care, long term care planning and advisement, accessibility in transportation, navigating health systems and services supporting livability.

Adira Foundation and Chronic Care Collaborative recognize that a person is never defined by their diagnosis. However people with chronic conditions, especially those with neurodegenerative diseases have unique needs due to their condition, which often change from day-to-day or month-to-month. Adira and the CCC look forward to working together to help tackle some of the big things for our community, like improved collaboration in health care systems, support and resources for caregivers, patient-friendly health care policies, and increased research that benefits all who are living with neurodegenerative diseases.

It is no small effort to organize, and to make known that there are 8 million individuals who are diagnosed in this country with one of these five diseases. By 2030, we expect the number of diagnoses will increase 38% to 11 million. As our baby boomer population advances, we will see an additional increase of those 85 years and over, a group expected to grow from 5.8 million to 18 million by 2050. Given that neurodegenerative diseases are more common in older adults, the desire to have better processes in place is not only necessary, but timely. The Adira Foundation and the CCC see opportunity in a shared voice for people with chronic illnesses and attention to listening to their needs to find ways to benefit individuals and families through like minded approaches and a call to action.

In 2020, Chronic Disease Awareness Day (#ChronicDiseaseCO) was a virtual event for the first time due to COVID-19. A sense of community is always important, but now more than ever while all people, especially those living with chronic conditions are practicing strict social distancing to protect themselves and others. Please help us continue to stay connected via social media and more virtual opportunities to continue to unite, listen, support each other, and spread hope. 

We encourage you to share your personal connection to neurodegenerative diseases on social media and use the hashtag #Heart4ND to help raise awareness and help others. 

To be a part of the conversation and to participate with Adira Foundation in other ways visit http://www.adirafoundation.org, be a part of the #Heart4ND online movement, and follow us on Facebook and Instagram. To learn more about the Chronic Care Collaborative’s efforts in Colorado, please visit https://www.chroniccarecollaborative.org/.

By: Marilyn Spinner, Chief Development and External Affairs Officer for Adira Foundation and Sara Froelich, Executive Director of the CCC

What’s this facility fee on my medical bill?!?

Did you know that where you visit your doctor can determine the fees you’re charged for the visit? It’s true.

Many healthcare consumers are seeing a sudden rise in cost for their doctor’s visit due to facility fees. Even those with metallic-level health insurance plans are not immune to these fees, as many health insurers do not cover facility fees or only cover a portion.

So, what is a ‘facility fee?’

Facility fees are additional charges that you may have to pay when you visit a doctor at a clinic that the doctor does not own. Facility fees are often charged at clinics owned by health systems or hospitals to cover maintenance costs for the clinic.

Under our current federal law, Medicare reimburses hospitals and clinics at a much higher rate than independent physicians. This disparity has catalyzed a trend of hospitals and health systems buying independent doctors and employing them within their systems. Once employed by the hospital, the hospitals can then charge a facility fee each time the physician has a patient visit or performs a procedure.

How can facility fees be avoided?

  • Check with your insurer. Ask your insurer what their policy is on facility fees.
  • Talk to your care providers’ staff. When you call to make an appointment, ask if you will be charged a facility fee.
  • Talk to your doctor. If a facility charges a fee you do not want to pay, ask your physician if they see patients at a different location that does not charge facility fees.
  • Negotiate. Appeal to your health insurance provider to waive or lower the fee, or to cover more of the cost.

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.