Everything Changes - The Guide to Young Adult Cancer

Everything Changes is throwing a 1-year-old birthday party for the Affordable Care Act. Don’t be embarrassed if you don’t know what’s in the bill - you’re not alone. Our big, broken health care system needed a fabulous new makeover; the changes are welcome, yet complex.

I’ve made a cliff notes version of the main parts of the bill that are already in effect and impact our freedom to access care. Please read, check back, and share the info with your friends and families so we can all better understand and celebrate our new healthcare freedoms and rights.

 FREEDOM TO ACCESS CARE!

Caps
No more caps. Insurers can’t set dollar limits on your lifetime benefits coverage, no exceptions. Annual benefits caps have been raised to $750,000 and will also be fully eliminated in 2014. Big Darn Deal = Cancer patients don’t have to worry about rationing their care for fear of being cut off.

Kiddos
Insurers are required to provide coverage to kids with pre-existing conditions. Applies to kids 19 and under. Big Darn Deal = Have you ever paid out of pocket for asthma treatment? Enough said.

Young’ins
Young adults can be covered under parental insurance plans until age 26, including married young adults, students, and non-students. Big Darn Deal = Most young adults are not slackers, we just can’t afford insurance while job searching and working entry level jobs with few benefits.

U-Turns
Before, if an insurance company got hit with a big claim, they could find an unintentional error on your application (even from years ago) and use it as a basis to make a big u-turn and deny you coverage. This u-turn is called a rescission and they can’t do it anymore. Big Darn Deal = Your mom is diagnosed with breast cancer and her insurance company can’t deny her coverage because she forgot to mention an ingrown toenail on her insurance application in 1999.

Pleas Please
You’ll now have the right to appeal decisions your insurance company makes about your health care (such as refusing coverage) to an independent, third party reviewer. Big Darn Deal = Insurance companies have to be accountable to someone besides themselves.

X-Change
What the hell are insurance exchanges? Think of exchanges as insurance shopping malls especially designed for individuals and small business that have a hard time finding insurance. The government is building the mall and will only let stores set up shop if they agree to treat individuals and small business shoppers fairly. Big Darn Deal = Insurance companies can’t rob blind a huge part of America’s workforce – individuals and small businesses.  Instead they’ll compete for our business with plans that are more affordable, and easier to understand and compare.

Do any of these changes impact you as a cancer patient or loved one?  How so? Share your thoughts and comments below.

Check back again for ongoing conversation about access to health insurance at everythingchangesbook.com.

The first step to reducing your medical debt is asking your doc or hospital to reduce your bill. This takes time, chutzpah, and smarts and is worth the work.

Asking for a discounted bill can sound impossible but it’s not.  Here’s why:  The cost of medical procedures, doctor’s time, and hospital services are not set in stone. In fact, different patients are even billed different prices for the same services. Walking into a doc’s office or hospital is not like walking into McDonald’s where a Big Mac costs the same for everyone in line.  With medical care, different people get charged different rates and your rates can be negotiated.  After all, negotiating rates is exactly what insurance companies do and you can do it for yourself too!

The National Endowment for Financial Education has a great brochure ‘Avoiding and Managing Medical Debt’.  These tips on how to ask for a reduced medical bill  are based on their expert advice:

1.  Have a positive attitude. Your odds are good: 50% of people who ask for reduced costs get them, plus using these strategies give you an extra advantage.

2.  Talk to the right person, face-to-face: Don’t do it by phone or letter. Talk in-person to your doc, your doc’s or hospital’s office, business, or billing manager.

3. Honey goes farther than vinegar. Be polite. Kill’em with kindness.

4.  Be persistent. Don’t take no for an answer.  (I never do!) Many hospital staff don’t know the correct policies and will say ‘no’ when they should say ‘yes’.  Work your way up the ladder.

5.  Build your argument. Find a copy of the hospital’s free and discounted care policy.

The American Hospital Association has a Billing and Collections Practices Policy.  4,200 hospitals have signed on agreeing to: a.) assist patients who can’t pay for all or part of their care, b.) make these policies accessible and written in clear language. Visit this link, click on ‘more than 4,200′. If your hospital is on the list, present this info in defense of your request.

6.  Contact your State Attorney General. If you’re at a non-profit hospital, many state AG’s will help ensure they provide charity care.  Find your State AG here.

7.  Compare costs. Conduct research to find out what patients with insurance or Medicare are paying for your same procedure codes. Demand the same rate.

8. Offer to pay part upfront.  Billing departments need cash from patients who often can’t paying anything at all.  Bargain for a discount in exchange for paying something upfront.  Will they cut in half a $15,000 bill if you give them $800 upfront?  Maybe.

9.  Get it in writing. When they agree to your request, get it in writing!

Does haggling for reduced costs excite or intimidate you?  Have you ever done it?

For grants, financial assistance, and money saving tips download for free the first chapter of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Scroll down on the right side of this page for the yellow highlighted download link.

I’m taking a vacation from cancer.  And the rest of my life.  (That is why I have some great guest bloggers on this week!)  I’m eating low country boil and sweet potato pie on a slow relaxing Georgia trip with my man.  No computer access at all.  But when I learned that my interview about young adult cancer and health care in the United States aired on the friggin BBC radio, I just had to duck into a library, get online and listen to it!

I hear from so many people all the time who are young with illness and totally screwed by the system.  People think young adults are naive and don’t want health insurance.  Bull.  We just aren’t give much access, we fall through the loops, and it is completely unaffordable.

Listen to MY BBC RADIO INTERVIEW on health insurance and young adult cancer. Click the link and fast forward to minute 13.  Please forward and tweet this widely.  We need stories about the young adult health care crisis to be heard here in the United States, not just in England!

Hope you are all doing well.  Now back to my sweet tea and collection of short stories.

Over and out,
Kairol

PS - If you were interviewed by the BBC about health insurance - what stories would you have to tell them?  Is this story something you could write about concisely and try to get it into your local newspaper as a letter to the editor?  Could you call your representative and tell them about it?  Have you ever done either of these things?

Many survivors my book marked the end of treatment with a trip. Some expensive, most on a shoe-string. Some foreign, others just a refreshing get away to see family or friends. If your thinking of adventure travel, Defy Adventures, a new adventure travel organization for young adult cancer patients. I recently interviewed Micheal Lepage, the founder.

Did you travel prior to having cancer?
No. Beating cancer spurred me to see the world. I have since backpacked Europe, trekked dormant volcanoes in New Zealand, camped in the Grand Canyon, and climbed to the top of the Cristo in Rio, where I asked my wife to marry me.

What were you hardest and most hopeful memories of treatment?
I’d just finished my 12 chemo treatments. Excited to return to school, finish my last semester and graduate, I dragged my parents, siblings, and girlfriend to my appointment. The news was the exact opposite of what I expected; I hadn’t responded well and I needed another four treatments. I felt crushed, embarrassed, and annihilated.  My most hopeful memory was a moment of clarity while sitting quietly in nature. I had one more treatment to go and felt sure that my cancer was gone and it was over. My next scan was blank and I was right.

What advice do you have for survivors after treatment?
Take it ridiculously slow. Here’s my formula; Take the total months of cancer treatments, divide it in half, and add 3 months. Plan for that much time to get back on your feet. If you get there sooner, great! But don’t push for it.

Talk about your new organization Defy Adventures.
We help young adult survivors reclaim their lives after cancer. We whisk them off to a remote part of the world to climb a serious mountain in Peru or survive in the jungle. Our expeditions create community, build self-confidence, inspire, and are a total blast.

So, have you taken any memorable trips after your cancer care? Were did you go? Did you get the O.K. from your doc before you traveled? Any tips for survivors wanting an inexpensive vacation? After treatment my friend Lisa Friedman and I went on a shoe-string trip to Costa Rica where we stayed in little beach villages with almost no tourists.

Is talking about money just too taboo?  Why in the young adult cancer world do I never ever hear anyone talking about medical debt?  It’s a crying shame because we’ve got plenty of it and it seems that a bit of conversation and education is in order.  Consider these factoids:

* More than 35% of all young adults have problems with medical bills including getting calls from collections agencies, paying off medical debt, or having to seriously alter their life to accommodate for medical expenses.

* Out of every age group in the United States, 18-34 year olds have the most medical debt.

Given these statistics, it seems likely that the numbers are even higher for young cancer survivors because we are racking up mega medical bills.

I’m going to make a series of blog posts about how to avoid and resolve medical debt, information about credit card usage for cancer patients, and where to get good credit counseling.

But before I dive into these issues, I wanted to pass on a suggestion from Joanna Morales, legal guru at the Cancer Legal Resources Center.  She says: Sometimes medical debt is the result of other unresolved medical issues such as unemployment due to discrimination or other issues around disability.  How can you get out of debt if you don’t look at the root of the problem?  Brilliant idea.  Contact the Cancer Legal Resource Center (866-THE-CLRC).  They are amazing and will help you brainstorm around the factors that are contributing to your medical debt.

Do you or have you ever had medical debt?  How often do you think about it and what impact does it make on your life?  Does it change any of the decisions you make about your care?  Is this something you discuss with friends, in cancer support groups, or talk about online?  If not, why not?

Shannon and I are ditching our car for two months and seeing what life is like.  (Evil Chicago potholes caused $1,800 of damage to our car, and we don’t want to shell out the cash to fix it.)

In a way I’m glad - it is forcing me to actually do something that I often complain about: get serious about cancer and the environment.  Did you know that four major chemicals released by car engines are proven to cause cancer in animals and humans?

I’m not going to change the world or reduce young adult cancer incidence rates. In fact, I think it is dangerous to think that individual actions, like using CFL light bulbs or buying eco-crap, are going to solve the decline of our environment.  Nope, for that we need tougher regulations on car emissions, investment in public transit, and more walkable communities.

But until then, I am glad to be trying out a life that is just a tad bit less hipocritical…. how can I bitch about cancer and the environment while I’m driving my car everywhere?

Having no car has been an adjustment and sometimes frustrating.  But there are some big time benefits too: I get more exercise, meet more neighbors walking, and read more and see cute kids on the bus.  Plus we joined a non-profit car share so we have wheels for big errands.  This would not have worked if I still had treatment fatigue, and I might not like it come winter.  We’ll see…

How often do you drive? Do you ever equate daily activities of your life with carcinogenic output?  If you have had major illness, treatment, surgery, did it affect your driving habits? Have you ever used the American Cancer Society’s Road to Recovery program?

Whole Foods ain’t nicknamed Whole Paycheck for nothing. For young adult cancer patients (or anyone else with an illness) co-pays, medicine, medical debt, student loans, and time off work all take a toll on your cash flow - not to mention this whole recession thang.

I only shop at Whole Foods occasionally and am careful to buy the best bang for my buck items.  Here are my favorites:

1. Wild caught yellow fin tuna burgers, frozen
Because they are frozen they won’t go bad before I can eat them (spoilage is the worst waste of food money ever), plus most fish you buy at the market has been frozen anyway.  They are fast to cook, a nice hit of protein.

2.  Organic sausage
Expensive, but fast to cook, again a nice hit of organic protein.  I buy them for myself – Shannon eats the non-organic from Trader Joe’s – much less expensive.

3.  Organic Sale Produce
I buy mostly just a few sale items, but be careful in the produce aisle - there’s a difference between a sale and a good deal.  Example: regular priced organic romaine is way cheaper than on sale organic radicchio.  I also avoid berries - organic are too expensive - conventional too many pesticides.  Anti-oxidants? Show me a cancer study that was not on rats and made a truly significant difference with only a pint or two of berries.

4.  Spices
I usually use fresh lemon, salt, and pepper instead of spices but if I want to buy a spice, bulk at Whole Foods is the cheapest around.



5.  365 Brand Body Products
Walk the body care section with blinders on, by pass all the green-washed, pretty labels that will eat your wallet alive, and head straight for the 365 products.  They are very well priced and free of most skanky carcinogens like parabens.

Do you ever shop at Whole Foods or is it way beyond your budget?  Have you ever used food stamps at Whole Foods?  What are your favorite bang for your buck WF items?  Help me grow my list!

With medical bills, college loans debt, and entry level jobs, most young adult cancer patients cannot stroll into Whole Foods and shell out $39.95 for a 5-oz. bottle of Dr Hauschka’s body moisturizer. But, that doesn’t mean you have to slather your skin or wash your hair with superfund site sludge either.

Beth, the blogger at smartfamilytips, has scoured the extensive Skin Deep Cosmetics Database in search of personal care products that are low in toxicity, affordable, and available outside of the bourgeoisie bodycare belt. Beth’s list includes products available at Target and CVS, and ranging in price from White Rain to Burt’s Bees. An important note that Beth makes is that just because one specific Pantene, L’Oreal, and Maybelline product is on the list does not mean that all of those company’s products are eco friendly.

Another option is to crack open the kitchen cupboard and your fridge. I’ve been using olive oil all winter long to moisturize. I have yet to wash my hair with eggs.

Has cancer made you want to reduce the toxins you apply to your skin and hair? If so, how does it affect your wallet? What brands do you choose to use? Do you ever venture into homemade beauty products?

I read a fantastic article in the New York Times, by Lesley Alderman, about how to save money on prescription drugs. I’ve slash out the doughnut hole lingo and other senior factors and created a summary version that relates more to 20 and 30-somethings.

As part of the research for my book, I’ve done a ton of research on resources for discount drugs, and other forms of financial assistance for young adult cancer patients. On the right column of my blog page, click ‘Download Chapter One’, underneath the cover of my book. The resources section at the end of this free PDF is loaded with my finds.

Snail Mail Drugs
If you have health insurance, call the 800 # on your card or search on line to see if your company offers a drug mail order system. Many do. This service tends to be used for prescriptions you take on an on-going basis. For example I pop a levoxyl every single day, and will for the rest of my life. I could get these sent in the mail from my insurer at a huge discount. This service, however, would not be used from a temporary drug, such as an antibiotic for an infection. The paperwork to sign up for this service is relatively simple, so what the hell am I waiting for? Bulk levoxyl here I come.

Brainstorm With Your Doc
To your next appointment, bring a list of your Rx’s or the actual bottles. If you have health insurance also bring a copy of the list of drugs your insurer covers – this is called a formulary. You can get it by calling your insurance company or visiting their website. Then ask your doc the following questions:

• Is there any duplication of medications – are they all necessary?

• Have they all been effective and do you need to remain on all of them?

• Are you still on the correct dosage?

• Is there a generic version that could be used instead? (Be sure to ask about generics anytime you are given a prescription.)

Comparison Shop
If you are paying out of pocket, check out Destination RX to shop around for the best prices on prescription drugs. Times reporter Lesley Alderman also suggests trying the local or mom and pop drugstores in your area too. Sometimes they have surprisingly lower prices.

No Insurance or Low on Cash
If you don’t have insurance visit the Partnership for Prescription Assistance, that has a database and online application for free prescription programs for low-income, uninsured, and underinsured patients. Yes, the organization irritates the hell out of me because it is a non-profit group run by pharma to help those of us who cannot afford their drugs, and they are likely just getting a tax deduction from it all plus good PR, but I guess we take what we can get, right?

Are there other ways that you have tried to cut your Rx costs?  What was the most you have ever paid for a prescription?  (I once got a shot that cost $2,000.)  Do you ever get Rx by mail?  If so, has it saved you money?