Congress Takes Steps to Undermine the ADA

Many have heard of the Americans with Disabilities Act (ADA), but may not know all of the details. The ADA is the federal law that protects people with disabilities from discrimination in a variety of ways.

The ADA was passed by Congress in 1990, more than 28 years ago.  Congress improved protections in the ADA in 2008 by passing the ADA Amendments Act.  Most people are familiar with its physical access requirements, such as having accessible parking spots, ramps into buildings, and accessible restrooms. However, despite its age, many who are protected by the ADA, don’t know it.

In addition to physical access requirements, the ADA also provides protections for people with disabilities in the workplace.  Title I of the ADA requires that covered employers provide eligible employees with protection against discrimination and rights to privacy, as well as access to reasonable accommodations. For more information about these protections and how they apply to individuals diagnosed with cancer AND their caregivers, visit:

The ADA also provides protections for children, adolescents, and young adults with disabilities in school, including those diagnosed with cancer.

Approximately 36% of adults ages 65 and over have some type of disability. Learn 7 facts about Americans with disabilities.

This month, Congress took a step to erode the protections in the ADA.  The U.S. House of Representatives passed (252-192) the ADA Education and Reform Act, which forbids individuals with disabilities from suing a business for violating their rights under the ADA, unless they first:

  1. Provide written notice to the business that they are in violation of the ADA
  2. Wait 6 months to see if the business fixed the violation

Opponents of the bill argue that this allows businesses to refuse to comply with the ADA, until an individual with a disability sends them a written complaint and then they get another 6 months to comply. Meanwhile, the individual with a disability is unable to access that hospital, doctor’s office, restaurant, store, movie theater, hotel, or other public place.

Advocates for people with disabilities are skeptical that businesses need more time to comply with a law that was enacted almost thirty years ago.

In what other area of society do we allow a business to ignore a law until someone sends them a written complaint?

Oh, wait.  That sounds a lot like health insurance appeals.

The bill now awaits a vote in the U.S. Senate. For more information about how to be an effective advocate, visit Stay tuned.




Triage Cancer Joins the Metastatic Breast Cancer Alliance!

Metastatic Breast Cancer Alliance

Triage Cancer is proud to announce that we are a new member of the Metastatic Breast Cancer Alliance! We are committed to providing education and support in an effort to ensure that the metastatic breast cancer community has access to crucial information about practical issues to improve their quality of life.

What is MBC?

Metastatic breast cancer (MBC) is cancer that originated in the breast but has spread to other parts of the body, such as liver, lung, bones and brain. MBC is the cause 40,000 deaths every year in the U.S. Learn more about MBC.

MBC Alliance Mission

Triage Cancer believes that collaboration is the key to providing valuable information and practical tools on the many issues that arise after a cancer diagnosis, particularly to underserved members of the cancer community. In alignment with our goals, the MBCA’s mission is to:

Unify the efforts of MBC Alliance members to improve the lives of, and outcomes for, those living with metastatic breast cancer and their families through increasing awareness and education about the disease and advancing policy and strategic coordination of research funding – specifically focused on metastasis – that has the potential to extend life, enhance quality of life and ultimately
to cure.”

One of the resources offered by the MBC Alliance is the Metastatic Trial Search, which is the first-ever clinical trial search engine designed specifically for people with MBC.

Metastatic trial search

Triage Cancer Resources & Tools

As a member of the MBC Alliance, we are committed to providing up-to-date and relevant resources to those coping with MBC. We offer a number of educational resources that have particular relevance to the metastatic community, such as our Quick Guides on disability insurance, clinical trials, and estate planning. Click here to watch our recent webinar on Taking Time Off Work & Disability Insurance.

Given the long-term treatment that many in the metastatic community receive, the financial burden can be significant. Triage Cancer hosts, which provides tailored information on topics that can have an impact on finances after a cancer diagnosis.

We also offer a number of free educational events throughout the year, which cover topics that pertain to the metastatic community:

Triage Cancer looks forward to working with the Alliance to continue to support the MBC community. For more information about the Metastatic Breast Cancer Alliance, visit

Medicaid Work Requirements & the Cancer Community

There has been discussion in the news over the last few weeks about the President’s decision to allow states to require that people “work” in order to receive Medicaid. This is referred to as the Medicaid work requirement. We want to break down these changes for you and how this might impact the cancer community.

If you live in one of the states that is about to make changes to its Medicaid program, you should definitely keep reading.

What is Medicaid?

Medicaid is the federal health insurance program that covers more than 74 million individuals who have a low income, low resources, and meet some other category of eligibility, such as being a senior, a minor child, or having a disability (receiving Supplemental Security Income (SSI)). In 2014, the Affordable Care Act expanded access to Medicaid to all adults with an income level up to 138% of the federal poverty level ($16,753 for an individual in 2018).  Eliminating the low resource requirement and the requirement to be receiving Supplemental Security Income, made it much easier for someone with a cancer diagnosis to get access to Medicaid coverage, and ultimately get access to care.

While Medicaid is a federal program, it is administered by both the federal government and states. Since 2014, 32 states have expanded access to their Medicaid program under the ACA.

There is a lot of discussion about the number of people who receive Medicaid, but don’t work, and whether or not that is fair. Those who are in favor of work requirements for Medicaid believe that “able-bodied” adults should be working if the federal government is going to pay for their health insurance coverage.

Those who are opposed to work requirements are concerned how they might impact people who are unable to work for a variety of reasons or who live in communities where work is difficult to find. Advocates are concerned that the additional administrative requirements will cause people to lose vital coverage, that people will be discouraged from applying for coverage, and that the number of uninsured people will start to rise again.  One of the many benefits of lower numbers of uninsured individuals was that it decreases the amount of uncompensated care that hospitals provide. When hospitals have high levels of uncompensated care, they are more likely to close, which impacts access to care for everyone.

Who Receives Medicaid?

According to an analysis by the Kaiser Family Foundation, most Medicaid and CHIP enrollees would be actually be automatically exempt from the requirement because of their age or disability status.

Medicaid Work Requirements & the Cancer Community

What are the New Medicaid Rules?

In January, the Trump Administration announced its decision to make significant changes to the Medicaid program, by allowing states to apply for waivers to impose work requirements on Medicaid enrollees in their state. The Centers for Medicare and Medicaid Services (CMS) released rules for the states who want to apply for those waivers.

The rules forbids states from imposing work requirements on certain populations, such as the elderly, minor children, individuals who are pregnant, and those receiving SSI.

CMS also requires states to exempt individuals who are “medically-frail.” CMS defines “medically frail” as those who have “disabling mental disorders; chronic substance abuse disorders; serious and complex medical conditions; physical, intellectual, or developmental disabilities that significantly impact the ability to perform one or more activities of daily living; and those who meet Social Security disability criteria.”

While CMS does remind states to consider how some communities have high unemployment rates due to economic factors, it gives states significant flexibility to design their own requirements. CMS also suggested that states could allow for “community engagement” alternatives to work, such as job search, job training, volunteering, community service, or education.

Work requirements are likely to have an impact on everyone receiving Medicaid in a particular state, because everyone will have to document that they meet the requirements. And, the CMS rules allow for states to ask enrollees to certify they are still eligible as often as monthly.

Which States Want Medicaid Work Requirements?

These eleven states have already applied for waivers to add work requirements: Arizona, Arkansas, Indiana, Kansas, Kentucky, Maine, Mississippi (still in process), New Hampshire, North Carolina, Utah, and Wisconsin.  Additional states are considering submitting requests.

Medicaid Work Requirements

Since the CMS announcement, Kentucky and Indiana’s waivers have already been approved and those states are moving forward with implementing plans for a Medicaid work requirement.

Click here to learn more about the impact of the Medicaid waivers and to see what the states are asking for in their waivers.

What is in Kentucky’s Waiver?

Kentucky’s waiver requires people to work 80 hours a month, or alternatively to engage in job searching, job training, community service, or education. Drug treatment and caregiving for a non-dependent relative or another person with a disabling medical condition are also considered work activities.

Kentucky Medicaid enrollees can obtain an exception to the work requirement if they can verify one of the following during their month of noncompliance with the work requirement:

  • Disability, hospitalization, or serious illness of enrollee or immediate family member in the home;
  • Birth or death of a family member living with the enrollee;
  • Severe inclement weather including natural disaster; or
  • Family emergency or other life-changing event such as divorce or domestic violence.

A primary caregiver of a dependent minor child or adult with disabilities per household is also exempt.

In addition to the medicaid work requirements, the waiver also establishes premiums, deductibles, benefit restrictions, and six-month coverage lock-outs, while eliminating non-emergency medical transportation.

Also included in Kentucky’s waiver is the elimination of the 3-month retroactive coverage for most adults, including those who are medically frail. This was very useful for someone diagnosed with cancer, so that they could start receiving care while their Medicaid application was being processed.

To read a breakdown of Kentucky’s waiver, click here. These changes are set to begin being phased in on April 1, 2018.

However, advocacy groups in Kentucky have filed a lawsuit to stop the implementation of Kentucky’s waiver. Kentucky Governor Matt Bevin has signed an executive order stating that if the court does stop the work requirements, that the Governor will eliminate the expanded access to Medicaid in Kentucky entirely. This would result in 48,000 people in Kentucky losing access to their health insurance coverage.

What is in Indiana’s Waiver?

Indiana’s waiver was approved on February 2, and requires adult enrollees to work an average of 20 hours a month and it is phased in over time. It also has a long list of exemptions and alternatives to employment. In addition to the work requirement, Indiana will also implement a “lockout” provision.  Medicaid enrollees who fail to submit their paperwork showing that they still qualify for the program, will be blocked from coverage for three months. Click here to read Indiana’s Medicaid waiver.

More Information

Triage Cancer will continue to follow the changes to state programs and how those changes might impact the cancer community and share that information on our blog.  Stay tuned.

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

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

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:

Sample tweet for Twitter:
Get the tools & training to help young women affected by #breastcancer. Apply to become a #lbbcyoungadvocate


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.