Category Archives: Advocacy

The Better Care Reconcilation Act: Explained

Majority Leader Mitch McConnell. Photo by NPR.
Yesterday, the United States Senate unveiled their plans for a new health care bill, titled the Better Care Reconciliation Act. 

What changes with the new healthcare bill?

Unlike the Affordable Care Act, the Better Care Reconciliation Act proposed by the senate will bring back lifetime limits and annual limits, meaning that once your insurance has spent a certain amount, they are no longer required to cover anything related to that diagnosis. Prior to the ACA, a common number might be one million dollars. Once the insurance company has spent that, they don’t need to spend anything else for your care. To put that in perspective: one major spinal surgery and five days in intensive care cost about five hundred thousand dollars- half of a million dollar cap. The majority of those with chronic or serious illnesses would reach their cap pretty quickly.

Under the ACA, every insurance plan is required to offer “essential benefits“. Those essential benefits are: outpatient care, emergency services, hospitalization, maternity and newborn care, mental health/substance abuse treatments, prescription drugs, rehab services, laboratory services (testing), preventative care, wellness services, chronic disease management, and pediatric services, including oral and visual care. The BCRA does not require essential benefits, meaning you could pay more or just as much for a plan that simply does not offer the same things. 
This bill slashes Medicaid by billions of dollars. What does Medicaid do? Well, direct from the Heath and Human Services website:” Medicaid provides health coverage for some low-income people, families and children, pregnant women, the elderly, and people with disabilities.” With the cuts being proposed, there will be much less money to go around. This will dramatically impact those who rely on Medicaid for health care. You can read more about how this bill will affect Medicaid here:
How does the bill affect taxes? Well, the BCRA will roll back most taxes associated with the Affordable Care Act, including two for those making more than 200,000 dollars a year, a medical device tax, a tax on tanning salons, and a tax on the insurance industry. It will restrict Medicaid payments to Planned Parenthood, which provides a large part of reproductive health care in the US- including prenatal care, contraception, STD screening, and abortions.
This will impact everyone, both in the private insurance market and those currently buying insurance through the government exchanges. It will no longer require employers to offer insurance, and will offer tax breaks to those making more than two hundred thousand dollars a year. This bill slashes Medicaid funding, changes how subsidies are calculated, and removes the requirement for essential benefits. It will completely change health care- and not in a good way.

Now, if you disagree with any of this, here’s what you can do. 

Contact your senators. This is particularly important when it comes to those living in red states- call/fax and let them know your concerns. Because this bill is being passed under budget reconciliation, the republicans can avoid a filibuster, but this means that they need every vote they can get, so call and share your story. This bill will cost 24 million people their health insurance in the coming years, and will effect everyone buying insurance in the private markets and on the government exchanges. 

The capital hill switchboard number is (202) 244-3121.

You can also send them a fax via the RESIST bot, which enables you to send a message easily. Text “resist” to 50409 or message the bot on Facebook. It will ask for your zip code, and then will find your senators and you can type out a message.
If you are in a blue state: call your senators and ask them to withhold consent. This will grind the senate to a halt. If you do request that, here is a script you can use if you call or text via resistbot:

“Dear Senator (Lastname), I am (Firstname Lastname), and I am calling to voice my support for you if you choose to withhold consent for Senate business over the way in which your Republican colleagues are handling the AHCA bill. Working behind closed doors on a law that would, if passed, affect one-sixth of our economy and take health insurance away from as many as 23 million people is unconscionable, and it calls for action. I want you to know that if you choose to withhold consent, and choose to slow or stop the business of the Senate in protest over the way in which the AHCA is being written, I fully support you, and you will have my vote the next time you’re up for re-election.”

And finally: educate yourself. Learn how this bill will affect you, and what it actually proposes. You can read here what this bill contains. 

We cannot let this pass. 

Finding my Voice

The most courageous act is still to think for yourself: aloud. -Coco Chanel

Last Friday, I had my feeding tube replaced. This replacement has to be done under X-ray to ensure proper positioning. Tube replacements are quite routine, and I’ve had many over the years since getting my surgical tube.  Many patients have no trouble having them placed, and need no sedation or anything of the sort. I’m not one of those patients. The many painful experiences I’ve experienced in interventional radiology make it incredibly difficult to be calm and lay still during replacements. This means that for every replacement, we use some sort of anesthesia or sedation. 

Earlier in the week, the radiology nurse called to confirm the date and time, and let me know that the medications I had used in the past could not be used this time- they needed to be administered by an anesthesiologist, not a nurse. They hadn’t scheduled for an anesthesiologist to be there with my procedure, even though I had told them what sedation protocol I had tolerated well last time. This meant that the procedure would either be rescheduled or I would need to use different medications.

I was panicked and scared, but not just because of fear of pain during the change- I was guilty for being uncomfortable about needing any sort of sedation something that “everyone else” seems to handle just fine. I was frustrated that we had to reschedule for something I viewed as “my fault”. I felt angry at myself for not wanting to try the more minor meds again, and upset that the changes scared me so much. Why was I being such a wimp? Again “everyone else” entered my head- if they can do it, why can’t I? These thoughts come into play much more than I’d like to admit. I want to be as strong as the mythical “everyone else”, and able to cope as well them.

When I explained my worries to my mom, and told her how I felt that I should be able to handle it, she said something crucial. She reminded me that this was my body, and mine alone- and that I needed to advocate for the method I felt most confident with.  She told me that I would be the one who had to live with the results. These are all things I know, things I’ve said and believe; but in those moments I felt weak. Is “everyone else” braver or stronger than I am? 

In this age of social media, it’s easy to compare. We forget how much the posts and photos you see are filtered. It’s easy to put up a smile and a quote and make things seem easy and simple- hide what happens behind closed doors in the moments of fear and panic and pain. What you see from someone’s Instagram feed is what they want to show, and it is impossible to see real life from snapshots and short sentences. Everyone’s story is different. Someone can seem a carbon copy of a story, but each journey is unique in every sense of the word.  So please, put the thoughts of “everyone else” out of your mind. (I know, easier said than done.) It matters not what they do, how they do it, how they handle it- what matters is you. Your body, your choices, your expectations, your reality. Comparing ourselves to the split seconds captured on social media is fundamentally impossible.

My mom reminded me of something I had  momentarily forgotten in my panic- this is my body. If this is what works for me, and allows me to comfortable and calm, then that’s what I should fight for. In the past, it’s been easy for me to fold under pressure. I don’t want to make things difficult for others, so I may not come out and say that I’m not okay with this. I’ve tried many things that I have been uncomfortable with, and have paid the price. I’ve felt bad about not pushing through, when I see someone else online or in person doing so. In the past years, I’ve become much better at advocating for myself, but it’s still a work in progress- one that is absolutely essential. More than we’d like to admit, patients try to convince themselves that what is best is what is easy. Or at least- I do. I hate imposing, and pushing for things that others don’t seem to think necessary. I want to make my caregivers jobs simpler, and I want to be “trying hard”. It seems silly that after several years, I still have these feelings of guilt and anxiety- but if anything, they have taught me to ensure that I am speaking up for what I want and need. If rescheduling a procedure allows me to get the medications I need, then that is my decision. I called back, and confirmed that I wanted to do reschedule, and use the protocol that had worked so well before. The swap happened, and it went brilliantly. In fact, it went better than it has ever gone. 

At the end of the day, you are the only one who knows how you feel. Doctors, nurses, family, friends- none of them live in your skin. No matter their opinions, in person or online, no one knows how it is to exist in your mind and nerves and heart. This is your body, and it should be your choice as to how things are done. 

Control and it’s absence: The Invisible Project

I’m a control freak by nature. I’m a pain about group projects, because I end up wanting to do the work myself. I dislike unpredictability, preferring a solid foundation of plans and goals. Through my illness, I’ve lost control of almost everything at one point or another. Before I got sick, my body was the one thing I always had control over, even if other things were falling apart. And suddenly  I didn’t even have that.

I’m the kid who’s had her life planned out since first grade. I was going to college, become a doctor, go to the Olympics, and then somewhere in there have six kids. I think I was pretty adamant about that, at six. As I got older, my dreams and plans evolved, but they were still concrete, and I never once imagined those things could change. When they did, my plan for my life was one of the first things I grieved. I was free-falling with no parachute, and when I crash landed somewhere in between hope and desperation, trying to find my footing on an ever slippery slope, all my carefully drawn maps and plans fell by the wayside as my world changed from living to simply surviving. For a long time, I refused to think about what would happen if I never “got better”. I refused to acknowledge the fact that my life had changed irrevocably, and that even if I woke up tomorrow cured, I’m not the same person who fell out of an airplane with nothing between me and life except for the open sky.

This past weekend, I had the immense privilege of traveling to San Francisco to attend the Invisible Project Gala. The Invisible project is a program by the U.S Pain Foundation, where they tell stories of people living with pain. I was lucky enough to participate in the Kids and Families Issue, and the experience was such a gift. There’s a lot of my journey that isn’t pleasant, to go through or to remember, but to look back and be able to own my story and who I have become- that is the greatest gift of all.

The Invisible Project isn’t about finding a way to be cured, or to be fixed. Rather, it’s about finding a way to manage and move forward. This project and it’s stories are proof that we can and will adapt, despite the odds or the circumstances. I talk about focusing on the silver linings rather than on the collateral damage, but sometimes the damage cannot be ignored. It can’t be fought through. It is simply there, and the best thing you can do is learn to keep going.

I’m no longer scared of not getting better. Sure, I’d like to. I still hope I will. This isn’t what I planned for, or what I ever expected. But this weekend, as I heard the stories of surviving and of living, I was viscerally reminded that I can do this. That my life can and will still be beautiful and strong and joyful, even if I never “get better”.

One of my all time favorite quotes is from the Lord of the Rings. “Not all those who wander are lost.” I’m still wandering. My detour hasn’t yet led me back to the main road- and maybe it never will. Life is rarely what we expect. But when I laid out my plans, all those years ago, I thought of what I wanted out of those dreams. I wanted to be happy, to be able to have those I love around me, and to watch them succeed and find joy. And those things, the things that are truly important- they can be found even in the darkest of times, even on the rockiest roads.

Strength isn’t about being cured or winning every battle that comes your way. If you take away nothing else from my story or the Invisible project, take this: we are much stronger than we first believe.

So here’s to impossible things, to surviving- to finding new roads, new lives, and to getting lost along the way.


My dad and I. 

Rare Disease Advocacy

Over the course of my journey with rare and complex diseases, there have been many moments of hopelessness. When you’re at the end of the road, when you’ve outlasted all the options- what do you do next? Where do you go on this shaky ground of fear and desperation? How do you take a step when all you’re waiting for is the other shoe to drop?

Because there isn’t any other option. There isn’t anything else. I’ve been asked a million times: how do you do it? You do it because you don’t have a choice. I wish to hell that on the impossible days I could just say “hey! It’s too much! I can’t handle it!”- but that’s not how it works. You go forward because it’s all you can do.

As one of my favorite quotes goes: “Some things don’t require courage. They just need to be done.”

And once you’ve moved on from the quagmire of non-options, you figure out what you can do. You adapt. You glory in the tiny victories, and in the inconsequential pieces of our lives that most take for granted. Your “normal” changes, and you learn to live despite that. Or perhaps because of it.

I attended the Global Genes Rare Patient Adovacy Summit. My first year attending the full conference. I was honored to speak on a panel on young adult advocacy, and something that I feel very strongly about. I also got to listen  to sessions run by amazing activists and awesome people, who educate and advocate and want to empower others to do the same.

I was astounded by the courage and resiliency found in the people who fight tirelessly for medications and legislation and quality of life, despite the fact that for many, modern medicine will not move fast enough. The changes they put into effect probably won’t benefit them, trials and medications they were crucial to the success of may not be their miracle. They are not necessarily fighting for themselves or their family members- they are fighting for the next family. The next teenager diagnosed with an incurable disease. The next parent who has to hear that there is nothing that can be done for their child.

So for those who are healthy, untouched by rare disease: start advocating. Push for cures, even if it’s not your child or you or a family member, even if you know no one who fights an incurable diagnosis. 1 in 10 have a rare disease. And so if you don’t know someone, odds are you will soon. And if that’s not reason enough: medical science has come a long way. As humans, we reach into the bridge of the unknown- but the technology is often moving faster than the people behind it. Yes, science is racing along at breakneck speed but that doesn’t change the fact that for most, the cure isn’t there. Because science doesn’t move fast enough.

That’s not to say it doesn’t help and fix and cure: I would be dead if it weren’t for modern medicine and technology. And so would many of my friends, and a good number of people at this conference.

And yet. For most, there is no treatment. There is no miracle drug. We do not have a way to solve their disease. We do not have a way to solve my disease. So advocates fight for symptom management, for accessibility, for quality of life. For adaptations that can make life better and more livable. And yes, we do fight for cures. But medicine moves slowly. Drug trials take time. And honestly, time is of the essence.

What do you think of when you think of rare disease?

I think of closed doors. Of dreams shouldered, sometimes forever- because things have moved on from living and into surviving.

1 in 10. If it hasn’t affected you yet, chances are it will.

And when that 1 in 10 finally affects you?
There are more than 7,000 rare diseases and disorders. And 95% of them have no treatment. Do you want to take those odds?

Members of We Are More: some of us were meeting in person for the first time. Everyone in this picture has a rare disease. (Except for Taxi)