Graham-Cassidy Fails, But Health Care Protections Still at Risk

Last week a new version of an ACA ‘Repeal and Replace’ bill was unveiled in the U.S. Senate. This legislation has been dubbed “Graham-Cassidy” after the two main authors of the bill, Sens. Lindsey Graham (R-S.C.) and Bill Cassidy (R-La.). In order for the bill to be passed under a process called Budget Reconciliation, the vote must occur before September 30, 2017.  The reason that Republicans are trying to advance the legislation through the reconciliation process is that debate time is limited, it cannot be blocked by a filibuster, and therefore, the legislation only needs 50 votes to pass. There are currently 52 Republican Senators. The Congressional Budget Office has only released a preliminary review of the potential impact of the bill, and found that millions of people would lose health insurance coverage under this bill.

Unfortunately, like previous proposals this bill would also take away consumer protections and ultimately leave people with pre-existing conditions unprotected. (read more about earlier proposals).

Triage Cancer is proud to stand with patient advocacy groups from across the country in opposition to the Graham-Cassidy bill.

Graham-Cassidy Fails

Also, in case you missed it, Triage Cancer’s CEO, Joanna Morales wrote an open letter to Alaska Senator Lisa Murkowski explaining why we at Triage Cancer, a non-partisan organization, are so concerned about any effort to limit access to health care coverage. Her letter was featured in the National Coalition for Cancer Survivorship’s blog.

In light of the fact that Senators John McCain (R-AZ), Rand Paul (R-KY) and Susan Collins (R-ME) have publicly stated that they would not support the Graham-Cassidy bill, Senate leadership has decided not to bring the bill for a vote this week. Today, President Trump announced that he now has the votes to pass the bill and will bring it up again during the next reconciliation period. That time period is unknown because the Senate would have to pass a new budget resolution that established a new reconciliation period.

While the ACA is still law of the land, there are still some challenges with respect to access to health care:

  1. Insurers still face uncertainty over the status of the subsidy payments
  2. The 2018 open enrollment period has been significantly cut to a total of six weeks (November 1 – December 15, 2017). But, note that some states have chosen longer enrollment periods:
  • California – November 1 to January 31
  • Colorado – November 1 to January 12
  • D.C. – November 1 to January 31
  • Massachusetts – November 1 to January 31
  • Minnesota – November 1 to January 14
  • Washington – November 1 to January 1
  1. The Administration has cut funding for marketing and in-person assistors to help people enroll in coverage by 90%
  2. The Administration is impeding states’ ability to stabilize their health insurance marketplaces

Stay tuned for updates and follow us on Facebook and Twitter for late breaking news.

The Spectrum of Advocacy

Triage Cancer has two new Quick Guides on advocacy topics and stay tuned for more Triage Cancer Spectrum of Advocacyto come.

Are you interested in becoming an advocate?  It’s likely that you already are!

The Spectrum of Advocacy shows many of the ways that you can be an advocate in the cancer community.  From advocating for yourself, to advocating through social media, to policy and legislative advocacy, there are endless ways that you can use your voice, share your personal story, and help others!

Triage Cancer also has a new Quick Guide on some different ways that you can get involved in Research & Scientific Advocacy efforts, such as:

  • Advocating for more research funding;
  • Applying to become a reviewer of research grants;
  • Attending a research conference as a patient advocate; and
  • Serving as a patient representative on an Institutional Review Board.

Hopefully, you can see on the spectrum to advocacy that engaging in advocacy doesn’t have to be complicated or take a lot of time.

Don’t forget: it is an election year (which is hard to do is you turn on a television or a radio)!

If there are issues that you care about, make sure to ask the candidates about their stance on those issues!

And don’t forget to vote in the primary and general elections in your state.  It’s the simplest way to use your voice and to make a difference.  Every vote counts.

Remember . . . if you don’t vote, then you can’t complain!

For more resources on advocacy, visit http://triagecancer.org/advocacy.

2015 Cancer Legislation

Many laws exist to protect individuals coping with cancer, however, there is still more Triage Cancer Advocacythat can be done to improve patient care and protect patients with cancer. This is where advocacy comes into play. The following pieces of legislation are currently pending in Congress and are relevant to those coping with cancer, their caregivers, and their health care professionals.

The Cancer Drug Coverage Parity Act (H.R. 2739/S. 1566), bipartisan legislation that would require private health insurance plans offering intravenous cancer drug benefits to provide parity, or equal coverage, for orally administered and self-injectable cancer drugs. The bill was introduced this summer but no other action has been taken in either the House of Representatives or the Senate.

The Patients’ Access to Treatment Act (H.R. 1600) would establish limits on cost-sharing for health insurance plans that cover prescription drugs and use a formulary or other tiered cost-sharing structure. In other words, this bill would prohibit health insurance companies from charging consumers more for specialty drugs than for other prescription drugs. This bill was introduced in March 2015, but no action has been taken in the House of Representatives.

The 21st Century Cures Act (H.R. 6) would provide new funding for the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA). This funding would allow these entities to addresses the issues around information blocking and working to improve the interoperability of electronic health records (EHRs) and to support precision medicine and other areas to accelerate cures and improve cancer care. This bill has passed in the House of Representatives and is currently awaiting action in the Senate.

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (H.R. 3381/S. 1883) would track childhood cancer incidence and improve survivors’ quality of life. The goal of the bill is to accelerate the development and availability of promising childhood cancer treatments. This bill was introduced in the House of Representatives and the Senate in July 2015 and has been referred to health subcommittees, but no other action has been taken.

The Planning Actively for Cancer Treatment (PACT) Act (H.R. 2846) would provide coverage for cancer care planning and coordination under Medicare. This change would provide individuals with Medicare and their healthcare providers resources to ensure that a clear cancer care plan is developed and assessed throughout all cancer-related care. This bill was introduced to the House in June 2015 and no further action has been taken.

For more details about any of these bills, visit https://www.congress.gov/.

If you would like to get involved in advocacy but aren’t sure how, consider joining another organization’s efforts. For example, if you sign up for ASCO’s Act Network you will get alerts when cancer related legislation is being discussed or voted on in Congress and you are able to send messages using the pre-drafted editable alerts, find the contact information for your elected officials, see how your member of Congress votes on the key issues, and draft your own messages to email or send a letter to your member of Congress. The American Cancer Society Cancer Action Network (ACS CAN) is another resource to help you participate in legislative advocacy. ACS provides pre-drafted messages that can be personalized for you to share with your government representatives.

Triage Cancer has an entire webpage dedicated to helping you engage in advocacy efforts and even includes the social media handles for several elected officials to make it easier to engage with your members of Congress online. Not sure how to use social media? Triage Cancer teamed up with Living Beyond Breast Cancer to provide a webinar on Twitter as An Advocacy Tool. We will also be hosting our very popular webinar on how to be an effective advocate in early 2016. Sign up for our newsletter for updates to our webinar schedule.

You can make a difference in the lives of those coping with cancer, so write an email, send a letter, make a phone call, or even tweet at your local officials and make your voice heard today!

The Surprising Power of Volunteering

Today we are sharing an inspiring story and wonderful opportunity from Terri Wingham, Founder & Executive Director of A Fresh Chapter.  

***

TerriIf you had told me when I was in the trenches of surgeries, chemotherapy and symptom management that the way to heal the “emotional scars of cancer” was to step outside myself and help someone else, I might have punched you (or at least wanted to).

How dare you suggest to me that the way out of this hell is to volunteer? Do you have any idea what I have been through?”

And yet, as treatment came to a close, I felt completely unprepared for the mounting pressure to get back to “normal” or to magically discover my “new normal” – whatever that meant. If I had to choose one word to describe how I felt during the bleak months between my double mastectomy and reconstructive surgery, it would be lost. Lost with no road map for how to become found again. I felt like a mutilated, fragmented, and depleted shadow of the successful, outgoing, put-together 30-year-old, I had been the year before.

It was only in my search for a bridge out of this darkness that I stumbled into the power of volunteering as a mechanism for healing.

It was New Year’s Day 2011. The night before I’d had a falling out with a close friend who told me she felt like cancer had turned me into a bitter and negative person. She worried that if I didn’t “snap out of it”, no one would want to be my friend anymore.

To be honest, I had become bitter and negative. I felt like an alien in a world of surface level conversations, pretty dresses, and perfect lives. I didn’t know how to fit back into the life cancer had ripped me from, but I knew I didn’t want to take up permanent residence in my isolation and anger.

I wanted to feel inspired again.

On January 1, 2011, I took a long walk by the water in Vancouver and asked myself these Terri with Boyquestions, “What would inspire me? What could I do that would be so epic that cancer would no longer be my defining story?”

Out of nowhere, I had a vision of volunteering in Africa. It didn’t immediately compute. Africa?!? I had never traveled anywhere beyond Europe. I had no desire to serve in the Peace Corp. I had barely even volunteered at home before cancer. Yet, this vision of me boarding a plane to the other side of the world gave me something to hang on to.

Three months later, I arrived in Cape Town and fell headlong into the love of a group of rambunctious toddlers at an underfunded daycare. For six weeks, each morning I helped to feed them, teach them basic English, and show them some extra love and attention. In the process, they gave me joy, and hope, and a feeling of purpose – just a few of the things cancer had stolen from me.

In the four years since, here’s what I have learned about why volunteering can help us heal and set us on the path to discovering new purpose in our lives:

  1. We see that struggle is universal and so is resilience. When we meet people who have dealt with overwhelming challenges in their lives and yet still choose to get up every day and move forward, it reminds us that we can do the same thing.
  2. We build new connections with like-minded people. Cancer can change our friendships, our perspectives, and our way of being in the world. It can be excruciatingly lonely to feel like people can’t relate to us. But, when we do things in-line with our interests and values, we quickly develop new connections and friendships.
  3. We get to discover new skills and new purpose. By finding ways to give back, we are exposed to new ideas, new ways of looking at the world, and new opportunities to feel lit up by life. These experiences can help us develop new career paths or uncover new hobbies.

An Opportunity for You To Start Fresh

Terri with GirlIf the idea of blending volunteering and meaningful travel resonates with you, A Fresh Chapter invites you to apply to join us for our fourth India Odyssey Program in March 2016.

You’ll have the chance to volunteer with inspiring community based projects in New Delhi, India and then stand in awe as the sun rises over the Taj Mahal. Applications are open September 10-17, 2015. Adults of any age who have experienced any type of cancer and are healthy enough to travel are eligible to apply. If you’re interested in learning more please visit our India program site:  A Fresh Chapter India Odyssey | March 5-19, 2016.

In whatever shape or form volunteering appeals to you, it’s important to remember that it doesn’t have to be a grand gesture and you don’t have to completely reinvent your life. It could be something as simple as calling a friend who is struggling and offering to just listen. It is in these quiet moments of connection that something shifts and we begin to heal.

About Terri: Following treatment for breast cancer, Terri found herself grappling with unexpected feelings of isolation, fear of recurrence, survivor guilt, depression, and anger. Searching for something that would inspire her again, she signed up for a volunteer trip to Africa and the dream for A Fresh Chapter was born.

Breast Cancer Advocacy

Ever wondered about how you can become an advocate?LBBC New Logo 2015

There’s a whole spectrum of advocacy: from advocating for yourself, to advocating for others in your community, from media advocacy (even social media) and research advocacy to policy and legislative advocacy, and everything in between. There are so many ways to be an advocate!

Living Beyond Breast Cancer’s Young Women’s Initiative is now accepting applications for the Summer 2015 Young Advocate Program. This program will train a small group of young women who have been diagnosed with breast cancer to use their personal experience to make a difference in their communities. This year’s training will be June 12-14 in Philadelphia, PA.

This program is offered to women who were diagnosed with breast cancer before age 45, live in the United States, and have an annual household income at least 200% of the Federal Poverty Guidelines ($22,980 for a single person). Preference is given to women diagnosed within the last 3 years or living with metastatic breast cancer. Selected participants will receive up to $850 in financial assistance to help offset the cost of attending, including travel.

Apply online or complete a paper application. The application deadline is Wednesday, April 15.

Help spread the word!

Sample post for Facebook:
Living Beyond Breast Cancer’s Young Advocate Program provides the tools and training to help young women use their personal experience to make a difference in their communities. Learn about the program details and apply by April 15: http://bit.ly/1MKHmDI

Sample tweet for Twitter:
Get the tools & training to help young women affected by #breastcancer. Apply to become a #lbbcyoungadvocate http://bit.ly/1MKHmDI

Waiting…

Patience is not simply the ability to wait – it’s how we behave while we’re waiting.
– Joyce Meyer

When you apply for a new job, you may face a waiting period before your new employer
gives you access to certain employee benefits, such as health insurance coverage.

These waiting periods often used to be anywhere from 30 Waitingdays to 6 months.

The Patient Protection and Affordable Care Act (ACA), also known as “heath care reform” or “Obamacare,” limited the time period that employers can make you wait for health insurance benefits to 90 days.

The ACA also requires most U.S. Citizens and those lawfully present in the U.S. to have health insurance coverage or pay a penalty, which is referred to as the individual mandate.  One of the exceptions to the individual mandate is that you are allowed to have one gap in coverage each year, up to 3 months.

The federal government limited the waiting period for benefits to 90 days and allowed people to have a gap in coverage up to 90 days because they were aware this may be an issue for people who are moving between jobs.

California went one step further and passed a state law that limited waiting periods to 60 days.

Last week, California Governor Jerry Brown, signed a new law (SB 1034) that took a step backward and changed the limitation on waiting periods to 90 days.  This brings California law in line with the federal law under the ACA.

So, if you are looking at a new job know that the waiting period for benefits cannot be longer than 90 days.  And if you currently do not have help insurance coverage and are curious how to get coverage until your waiting period is over, COBRA may be an option, you may qualify for a special enrollment period to buy a plan in your state health insurance marketplace or you may qualify for Medicaid in your state.

No Butts About it: Colorectal Cancer Screenings

Colorectal Cancer ScreeningUnder the Affordable Care Act (ACA or Obamacare) requires most insurance companies to provide free preventive services, including colorectal cancer screening, such as a colonoscopy.  This means that people don’t pay a co-pay, don’t pay a co-insurance amount, and it doesn’t get applied to their deductible.

The ACA also required these services to be covered free of charge under Medicare.  However, an unexpected loophole was created.

Routine colonoscopies are a covered preventative service.  However, if a polyp (a pre-cancerous lump) is found in the colon and removed during the colonoscopy, the colonoscopy stops being “preventive” and becomes “diagnostic” . . . and stops being free to the patient.

While this issue was fixed under the ACA for private insurance companies it hasn’t been fixed under Medicare.

But the “Removing Barriers to Colorectal Screening Act” (S.2348), a federal bill that is being reintroduced by Senator Sherrod Brown, seeks to fix this problem.

This House legislation will help to make colorectal cancer even more preventable, by making colonoscopy procedures cost-free for everyone.

Even though colonoscopies save many lives and are a major factor in preventing colon cancer, many people avoid the screening because of the potential cost this procedure can incur if polyps are removed. This bill will remove this obstacle and help to save lives.

4,000 Cancer Clinical Trials: Which ONE is Right for Me?

by David Fuehrer

If you or a loved one needs treatment for cancer how do you know which option is right?  The American Cancer Society says “trying to understand your treatment options can be overwhelming.” There are many types of treatments used against cancer, including traditional therapies and newer forms of treatment in clinical trials.

As a two-time cancer survivor and healthcare professional, I’ve learned a lot about treatment.  The most important lesson I’ve learned is that every person is unique.  What’s right for you may not be right for someone else.

Knowing your options is critical to making informed decisions.
Many physicians and support communities recommend that all patients consider clinical trials when exploring treatment options.

“No matter what stage your disease, you want to find out what all the options are right from the beginning.  The very best treatment may involve a clinical trial.”

Max S. Wicha MD, University of Michigan Comprehensive Cancer Center

Max S. Wicha MD, University of Michigan
Comprehensive Cancer Center

Clinical trials offer access to new treatments that are not otherwise available.  They provide extra check-ups to look for response to treatment and possible treatment side effects.  Clinical trials also offer the possibility of paying for part or all of your medical care during the trial.  They are an important resource for anyone fighting cancer.

But with 4,000 cancer clinical trials enrolling in the U.S., how do we understand the options?  These are FDA-regulated trials; sponsored by the National Cancer Institute, pharmaceutical companies and leading hospitals.  But each trial has a unique purpose, treatment type and patient requirements.  There is a lot to consider.

Ninety four percent of Americans have never been informed by their doctors of clinical trials in which they might participate.  The top reasons doctors don’t refer patients into clinical trials are lack of information on treatments and lack of access. (Source: Center for Information & Study on Clinical Research Participation http://www.ciscrp.org/professional/facts_pat.html).

A new resource for patients and healthcare professionals.
I co-founded CureLauncher with an FDA-Regulatory Advisor to help patients, caregivers and medical professionals identify their new treatment options.  CureLauncher provides three important resources that previously have been unavailable: CureLauncher Staff

  • Translated trial information so its easy-to-understand
  • Access to 100% of the enrolling clinical trials
  • Matches to clinical trials based on a patient’s unique goals and conditions

Our Relationship Managers start with a simple 10-question conversation about each patient. This information enables us to match people to clinical trials that may be appropriate for them.  Our team then reviews all of the study information with them and sends summaries to review with family and the medical team.

When a patient is interested in enrolling in a trial, CureLauncher is the only service that will call the trial site to schedule an appointment on behalf of the patient. All of our services are provided at no cost to the patient or medical team.  CureLauncher is paid from the clinical trial budgets.

CureLauncher is your personal advocate. Our mission is to empower patients and medical professionals to know all of their new treatment options.  Clinical trials may not be right for everyone.  But they are an important resource that everyone should be able to consider.   To learn more about CureLauncher or clinical trials, you can visit www.curelauncher.com or call our team at 800-488-6632.

Dave Fuehrer is a two-time cancer survivor and President of CureLauncher.  The organization matches people to new treatments for cancer based on their unique goals and conditions.  www.curelauncher.com has translated all enrolling cancer clinical trials into easy-to-understand information.  It is the only service that gives people access to ALL enrolling cancer clinical trials.  Prior to CureLauncher, Dave was an Innovation Consultant for Pfizer, General Electric and many others.  He has helped launch new products and services across North America, Europe and China.  Dave has an MBA in Technology Management and has completed Executive Education and Harvard Business School and MIT.   

 

Triaging Fertility Preservation & the AMA

This post addresses a recent advancement in the the issue of insurance coverage for fertility preservation.  We first highlighted this issue in the post Insuring Against Infertility.

by Raphael Yechieli, M.D.
Caduceus with First-aid Kit

The American Medical Association (AMA) just adopted a new policy supporting coverage of fertility preservation for cancer patients. This is a big deal. A recent study from California highlighted that only 2 – 4% of women eligible for fertility preservation actually underwent the process. The guidelines from the National Comprehensive Cancer Network and the American Society of Clinical Oncology are both unequivocal. Infertility as a side effect of treatment must be spoken about and fertility preservation should be offered to anyone whose fertility may be compromised by the treatment being offered. Alas, we can shout from the rooftops about the importance of fertility preservation, but without routine insurance coverage, these guidelines will be an impracticable recommendation.

Over 150,000 people under the age of 45 will be diagnosed with cancer this year. Treatments continue to improve, and long-term survival is becoming the norm; but many carry their battle scars long after the war is won. With a renewed focus on survivorship, the quality-of-life and healthcare issues that arise after treatment are now recognized as an important part of the cure. One particularly difficult side-effect of some cancer treatments is their effect on fertility. The same features that allow these treatments to be so effective in treating the cancer are what make them so harmful to the person’s future fertility.

Benjamin Franklin said “An ounce of prevention is worth a pound of cure.” Regarding fertility after cancer treatment, the more appropriate saying is “An ounce of prevention is the only cure.”  Fertility preservation prior to treatment is the best way to protect a person’s ability to have children in the future. The options available for survivors, especially women, have previously been limited. This is changing, with the emergence over the past few years of oncofertility, an interdisciplinary field founded at the junction of cancer and fertility. The advances in research and development are very exciting, and will provide people with options that were impossible just a few years ago.

Since 1998, the federal Women’s Health and Cancer Rights Act (WHRCA) mandates that insurers cover breast reconstruction if they covered the mastectomy. In fact, treatment of almost every side-effect from cancer treatment is covered by insurance, except for fertility preservation. Even in states with mandated infertility coverage, fertility preservation is not covered, because the person has yet to be diagnosed with infertility!

Last week, a very important step was taken. The Michigan delegation to the AMA presented Resolution 114, asking the AMA to support payment for and lobby for appropriate federal legislation requiring coverage for fertility preservation when cancer treatments may cause infertility. After hearing impassioned testimony from the Michigan delegation and multiple other delegations including medical groups at the intersection on cancer and fertility, the resolution was accepted by the AMA.

The advocacy will continue on the state and federal level. Currently, a bill is working its way through the California legislature, and similar bills are being prepared in other states as well. We will continue to work, one step at a time, to make sure that every person gets the care they need.

Raphael Yechieli M.D. is currently the chief resident of Radiation Oncology at Henry Ford Hospital in Detroit MI and a delegate to the AMA from the Michigan State Medical Society’s Resident and Fellow Section. He is passionate about survivorship and advocacy, and spends his time working together with his team to build hope, and destroy cancer.