Tuesday, September 19, 2017

911! Fight Against the Cassidy-Graham Plan

white background with red vertical lines on either side; black text "911!" and red text "Fight Against the Cassidy-Graham Plan" and black text "#savetheACA #ACAsavedmylife Not Standing Still's Disease"

Not only do we have to fight to protect the ADA, we still have to fight for healthcare. 

I'm starting to worry that this is going to be every fucking quarter, but I digress.

You can read the 141-paged plan (referred to as Cassidy-Graham, Graham-Cassidy, Graham-Cassidy-Heller, and Graham-Cassidy-Heller-Johnson) but here's the scoop on what this bill would do:
  • Eliminates subsidies for private insurance
  • Ends Medicaid expansion
  • Caps Medicaid money, leaving millions of people uninsured
  • Allows waivers to charge sick/ill/disabled patients more (fucking high-risk pools)
  • Stops requirements on ACA-required benefits
  • Repeals tax credits for middle class
  • Puts up barriers to health insurance for low income people (and removes subsidies)

Cassidy and others have said this block grant program would simply give money to the states for them to decide. It's essentially shifting ACA-type stuff to states rights type stuff, acting as though states could then keep ACA programs in place. Without the support at the federal level - and with a large number of anti-ACA governors - this won't be the case.

One scary thing to note is that the Congressional Budget Office won't have enough time to evaluate the bill before September 30th. This is the last day this bill could be passed with 50 votes (or 51 with VPence). Otherwise, filibuster could prevent the bill from being passed.

Graham-Cassidy-Heller (ACA Repeal) Simple Summary - Repeal and Replace is back. Take it seriously. Here's what it does: *Estimated 32 million will lose coverage within 10 years (not yet scored) *Ends Medicaid expansion. Health care for 11 million low-income adults. *Ends all subsidies for the exchange, replaced by a smaller and declining "block grant" *Block grant doesn't have to be spent on same population *Cuts coverage for low income seniors, children and people w disabilities by 7% by 2026 with a "per capita cap" (Yes, that's right -- a block grant AND a Lee capita cap) *Ends Federal protections on pre-existing conditions, life time caps and essential benefits. 50% of states expected to do so. *Ends all cost sharing payments to low income Americans *Ends all funding for coverage by 2026; 100% afterwards *Averages would be dramatically different: 20 states estimated to lose 35-60% of funding to move money to rural, red states *CBO has not estimated impact on premiums, but likely 20% spike next year *Would likely be presented to the House as "take it or leave it" if passes Senate *Provide no funding for recessions, natural disasters, public health emergencies, or price spikes *Targets women's health/family planning *Uses the same "50 votes" only partisan technique to pass; upends all bipartisan progress of the last two weeks - Source: Centers for Budget and Policy, prior estimates
Source: Andy Slavitt's Twitter; see alt-text for description
This is a more radical version of repeal and replace efforts so far.

I'm tired of fighting, so I'm sure you are, too. If we don't fight this one, though, we lose any progress we've made up to now.

What to do now:

  • Contact your Senators (especially if you live in South Carolina, Louisiana, Nevada, or Wisconsin)
  • Protest and picket (if able)
  • Get loud on social media
  • Send letters to the editors or reach out to your local news to explain your concerns

Some organizations opposed to this bill:

  • AARP
  • ALS Association
  • America’s Essential Hospitals
  • American Academy of Family Physicians
  • American Academy of Pediatrics
  • American Cancer Society Action Network
  • American College of Physicians
  • American Congress of Obstetricians and Gynecologists (ACOG)
  • American Diabetes Association
  • American Heart Association
  • American Lung Association
  • American Osteopathic Association
  • American Psychiatric Association
  • Arthritis Foundation
  • Cystic Fibrosis Foundation
  • Family Voices
  • JDRF
  • Los Angeles LGBT Center
  • Lutheran Services America
  • March of Dimes
  • National Health Council
  • National Multiple Sclerosis Society
  • National Organization for Rare Diseases
  • Planned Parenthood
  • Volunteers of America
  • WomenHeart

Further reading:

Monday, September 18, 2017

Double-Duty PT Starts Next Week

selfie of me in the car with sunglasses on, making a duck lips face; I'm wearing a grey sheer v neck tee with a black strappy bra underneath that is showing outside the v; to the right is a brownish blackish box with white text "Double-Duty PT Starts Next Week" and a white text box with black text "Not Standing Still's Disease"

I had my first spine PT appointment today. 

My spine PT is great. She recognized my autonomy as an engaged patient and even recommended a textbook on pain to me. It has newer research in it, so I'm on the hunt. Most of all, I appreciated that she's funny, too. We talked about high Adverse Childhood Experience (ACE) scores, the increased prevalence of fibromyalgia in abuse survivors, and safe vacuuming tips.

She even recommended basically a textbook on pain for me. I'm pretty excited to hunt for an affordable copy.

Physical therapy kicked my ass, even though it was just the evaluation. We even got my pelvic floor PT, which was scheduled to start next week in a different health system, switched to this system and location. 

Scheduling these sessions back to back may kill me, but we shall see. I'll probably have to write off Mondays as self-care days for the next few weeks/months.

I looked cute today at least!

Friday, September 15, 2017

Financial Resources for Chronically Fabulous College Attendees

background is a tinted photo with a white/silver mac keyboard, a white cup of coffee with cream, and a light wooden table; over this is white text "Financial Resources for Chronically Fabulous College Attendees" and "Not Standing Still's Disease"

Are you a current high school student starting to look at college next year, but wondering how to financially pull it off while living with health crud? Do you know one?

Here's a great collection of financial resources for chronically fabulous students looking at or attending college.


Of course, FastWeb is one of the largest sites talking about college funding. Visit their page around illness and disability scholarships.

The College Grants Database has a large selection of grants and scholarships for disabled students. They even have some for graduate school.

Iowa Compass: Center for Disabilities and Development has a comprehensive list of scholarships for both general disability/illness and specific conditions.

Of all places, Needy Meds has a large list of scholarships for various college and graduate levels.

Gabriel's Foundation of Hope gives out several $500 scholarships each year.

The Patient Advocate Foundation has a scholarship for students who are patients or have patients in their family.


If you live with a mental illness, make sure to check out these 25 Great College Scholarships for Students Living with Mental Illness.

Have an inflammatory disease like Still's Disease or Colitis? Check out the Abbvie Immunology Scholarship. They give away 45 scholarships each year of $15,000. (I wish I had this in college!)

You can snag a $500 scholarship from Lupus Inspiration Foundation for Excellence (L.I.F.E.) if you have lupus.

The Michael Yasick ADHD Scholarship is awarded each year to undergraduate students living with ADHD.

If you have ADHD or a learning disability, make sure to check out the scholarships available from the National Center for Learning Disabilities.

Do you have diabetes? Check out the Diabetes Scholars Foundation's college scholarship.

If you currently have cancer or have survived it, you should definitely check out the scholarship from the Cancer Survivors' Fund.

Cancer for College has a number of scholarships for cancer patients and survivors.

Regardless of if you're a cancer patient/survivor or have lost a parent to cancer, the National Collegiate Cancer Foundation has a scholarship for you.

The National Children's Cancer Society has an Ambassador Scholarship Program which gives 40 scholarships of $3500 each out.

The Michael A. Hunter Memorial Scholarship is offered to patients who live with leukemia/lymphoma or have a parent who does.

Legally blind? Make sure to visit the Lighthouse Guild to learn more about their $10,000 scholarships.

The Elaine Chapin Fund gives out scholarships to students affected by Multiple Sclerosis (MS), either personally or in their family.

The National MS Society has scholarships for first-time college students affected by MS, whether it affects the student themselves or a family member.

The PDSA (Platelet Disorder Support Association), which focuses on people with ITP, gives out $1500 scholarships in addition to free passes to their yearly conference.

You can find a list of scholarships for bleeding disorders at the National Hemophilia Foundation's site.

Have a Primary Immune Deficiency Disease? Check out this scholarship from the Immune Deficiency Foundation.

Shire offers two scholarships - one for ADHD patients ($2000 and coaching) and another for rare disease patients ($5000).

Have alopecia? Check out the "This Is Me" scholarship.

The Aplastic Anemia and MDS International Foundation offers a couple of scholarships.


If you live in Washington or Oregon, visit Incight to learn more about their scholarship.

Live in or around Washington DC? Project Ascend is a non-profit that provides community support and scholarships for students that are marginalized, disadvantaged, and disabled.

If you have lupus and live in Florida, check out the Michael Jon Barlin Scholarship.

Have T1D and live in Ohio? Check out the Thomas J. Seefred Trust Scholarship.

The Diabetes Hope Foundation provides scholarships for Canadian students.


Make sure to apply for as many scholarships as you're able to.

Always check with your intended college(s) on what funding opportunities they may have as well as what requirements you must meet to receive and maintain funding.

Talk to your campus' disability representatives as well on what accommodations they'll be able to provide for you. Don't forget that this might include housing, meal plans, moving courses to more accessible/centralized buildings, and more.

Check with your guidance counselor at school as well as on sites like FastWeb for scholarships in your community.

If you need to write an essay for an application, ask others to look at it and review/edit. (You can always reach out to me as well!)

Good luck!!