Stupid Cancer Young Adult Summit OMG 2013

 Since last year's summit, all I could think about was going to Paris Casino and buying one of those Eiffel Tower strawberry daiquiris. The reason why, is because last year I was in no position to buy one of those daiquiris. It was my first year going to a conference that would connect me with other young adult cancer survivors, actually discuss my feelings as a young adult cancer survivor, and find resources I didn't know existed to help me as a young adult cancer survivor.

Last year's summit was amazing, but all encompassing for me. I had never been to Las Vegas, so I tried to cram way too many things into the weekend.

This year, I wasn't going to let that happen. I purposefully didn't schedule tickets for theatre productions or attractions. I didn't even focus on finding the "best buffet on the strip." I went all in for this summit. I decided to be fully present. That was the best decision I could have possibly made.

This year, I went to break out sessions I didn't think I wanted to go to last year. I went to cancer as chronic, survivors guilt, and the just for girls session. You see last year, I was in the middle of writing my book and completely focused on health care legislation and insurance issues regarding my journey. I published the book last year, so this year I was free to focus on my emotions surrounding my journey.
And boy did those emotions pop out of nowhere. I actually cried for the first time in a long time. I even caught myself with wobbly voice when I spoke to others.

This year was cathartic for me-- but it was also incredibly fun. If you're even remotely considering going to this conference next year-- Do It! You'll meet great people, you'll reconnect with yourself, and you'll learn so much that you didn't even realize you might have wanted to know.

Stalling Tactics To Avoid Appeal

Hi everyone!
     I hope you all are enjoying your holiday season. I know I have been doing my best to focus on family and friend gatherings and celebrations rather than typical daily life. However, I'm realizing that I can not simply stop working on important outstanding items so I'm rejoining the world today.

 It has been awhile since I've updated you about my insurance situation. When last I wrote, I spoke about ERISA and how the law is interpreted to give the client only 60 days to appeal a cancelation of benefits from long term disability companies. I also discussed how I sent in my appeal along with a second certified/signature required letter request for my entire case file to be sent to me within the month.

Yesterday marked day 20 of the insurance company signing for said letter and I have heard nothing. I decided to give them a call to check up on the progress of my request only to find out that although they had the letter in their system, and indeed signed for it 20 days ago, they did not have it marked as requiring any follow up. Therefore, for the last 20 days, the company has simply not been working on the request. According to the worker I spoke with (the one who signed the cancelation of benefits letter-- and sounded shocked to hear from me, but then smugly asked how my holiday was) they will send me all of the documentation I requested within 7-10 business days.  I'll believe it when I see it.

Just a reminder of why we need to follow up with companies even if we've gone to all the trouble to send certified letters requiring signatures.

This is not the first certified/signature required letter this company has actively avoided responding to, claiming it was mismarked in their computer system. Therefore, I'm 100% certain it's a common stalling tactic that they hope will cause the appeal to be sent in late, and allow the cancelation of benefits to stand uncontested.

I'm glad I sent the appeal in despite not having all of the information I requested, because at least the process has begun and I'm not panicking over when this box of documentation will arrive and if it will be complete. Let's say I receive the box of information at the 45 day mark-- what if it's not all there? How long would it take me or an attorney to accurately go through it?  Probably more than the week I would have left before I would need to send the appeal letter in and make sure it arrived before day 60.

At least this way, should this case go to court it is not an "easily dismissed on a technicality" situation now.

Denial Letters Without Using Facts

Earlier this year I posted a blog with a denial letter I received stating I was denied coverage, because.
http://themalformationofhealthcare.blogspot.com/2012/08/denial-because.html

No, I didn't forget to finish the above sentence. The denial letter I received said I was denied coverage "because." No further explanation.

It turned out the reason I received the denial was because of an inter-insurance-company problem having nothing to do with me. So when the insurance company didn't pay my claim, they had no reason for why it was denied, and therefore left the section blank. Leaving me to panic, call them, and wait until they cleared up their error and pay the invoice prior to me ending up in collections for something that should have been covered through insurance.

Ready for something to top not giving a reason for a denial.....

Drum Roll Please.....

Yesterday, the insurance policy I have held since I had to stop working due to my arteriovenous malformation and chronic myelogenous leukemia sent me a letter listing off several reasons why they have decided to stop honoring their obligation to my claim. They included not hearing back from my doctor (although my doctors name was spelled completely incorrectly and I can only wonder if she even received the documents she was asked to fill out). Partial information from a report done by a doctor who in a video taped interview stated he did not treat either condition I have. Video taped surveillance showing me go into a local business for 3 hours (without mentioning it was a dental office)...And the piece de resistance....

 because my oncologist informed the company that I was in complete remission from AML.

You can imagine my relief to hear I was in complete remission from a condition I was never diagnosed with.

Here's the portion of the letter:

Yes, this denial letter stooped so low as to deny my claim using completely false information.

AML is Acute Myeloid Leukemia. It is a really terrible blood cancer that is difficult to control. I have known two young adults who have battled this disease. One survived it and one did not.  AML is treated with aggressive traditional chemotherapy and often a bone marrow transplant.

I have Chronic Myelogenous Leukemia-- a completely separate condition that currently has no proven "cure" outside of a bone marrow transplant. Fortunately for me, as long as I take a daily chemotherapy pill my chronic leukemia is kept at bay in the body. It is not a traditional "remission" as suggested by this letter. It is a conditional cytogenetic response to a daily chemotherapy drug.

I sent in the appeal letter today correcting their misinformation and requesting my policy to be reinstated. Should this company deny the claim a second time my only recourse is to hire an attorney.

Basic Tips on Working With Health Insurance

As many of you are aware The Malformation of Health Care book just became available on Amazon.com

 http://www.amazon.com/dp/B009V37CXU

In the book I detail several tips and tricks on how to navigate through our very complex and often times confusing health care system.

Today I want to take you inside the book and give you some basics of where to begin. Although some of these may seem obvious, they are often things that are overlooked when thrown into a stressful situation.

Checklist for Health-Care Rights and Service

Know your benefits: Get a printout from your insurer and know your deductible and out-of- pocket maximum. This way, you can track what you are responsible for. Be an educated consumer.

Ask for a case manager. This is a contact person within your insurance company who will know your case and be of real benefit to you if it is a complicated one. If your insurance company says you can't have a case manager, keep asking. Once they see all the claims coming in, most likely the company will change its mind.

Keep all of your insurance claims and bills/booklets, which you can usually do online. Keeping hard copies is probably a good idea, just in case your computer or backup drive dies.

Appoint an organized family member/friend to help you with all of this because it can be overwhelming␣especially if you're sick.

Reach out to a hospital social worker or to local nonprofit organizations (such as the Cancer Legal Resource Center, the Leukemia & Lymphoma Society, etc.) for ongoing help or support. They will know of good resources to help you if you're in trouble and can save you a lot of legwork.

Write down the name of anyone you speak with at your insurance company every time you contact your provider or your provider contacts you. Make sure you record the full name, date, and a detailed synopsis of the conversation.

Follow up!

If you are denied coverage, do not be afraid to appeal. Jump through all the hoops the insurance company asks of you, and document everything. If, at the end of the appeals process, you need an attorney, you will have something to give him or her.

Learn all you can about your condition. A lot of times, insurance company workers know little about your condition.

Check with your insurance company about its fertility policies. I include this advice because many young adults are diagnosed with serious illnesses that may require heavy medications and treatments. At the point of diagnosis, someone who is in their late teens may not be thinking about future plans for a family.

Have a relationship of open communication with your doctors, who can help to advocate for you. Know that there is creative coding for blood tests and other procedures you may require to facilitate your health. A test that might not be covered if coded in one particular way may pass muster with your insurance company if coded in another way.

Know your out-of-network benefits! Sometimes you may be referred to specialists who may not be in your insurance company's network␣ What is the percentage and how does your out-of- network benefit work with your deductible? Do any of the company's in -network doctors offer the same care as the out-of-network specialist to whom you have been referred? If not, most policies have provisions to cover out-of-network providers when no in-network doctor has the same capability.

Try to connect all of your doctors, so that each knows about your health in relation to the other physicians providing your care. If you can start a group dialogue among your doctors, your care will be better.

The Malformation of Health Care (Chapter 25) Copyright Erin Havel 2012

Chronic Cancer

"So when are you done with treatment?"

That's a question that until recently had a fairly solid answer for most cancer patients. Many chemotherapy treatments have a beginning date and and ending date for each cycle.  A three month cycle or a six month cycle with an option for further treatment (if necessary) addresses the above question. There is no confusion because it is a solid timeline that people are used to hearing.

You can imagine the confusion when someone asks me that same question and I'm forced to say-"Never."

The problem with the question is that it doesn't allow for the current advancements in medicine.  Many cancers are now being treated differently than before. Chemotherapy in the traditional sense isn't the only treatment option being exercised to care for patients. New medications are being developed to help target specific cancer and cancer cells rather than attacking an entire body to reach a small section.

For me, I am on a daily TKI (Tyrosine Kinase  Inhibitor) that helps to manage my CML. The condition is chronic, it is not temporary, and unless someone attempts an ideally successful bone marrow transplant, currently there is no proven cure. I will take this TKI for the remainder of my life, as long as it continues to work, I don't develop a resistance to it, or the cancer researchers discover a cure through clinical trials.

Do NOT feel badly for me though. Prior to the early 2000's CML was almost certainly a death sentence. Traditional chemotherapy had little effect on the disease. With my TKI, I have a chance to live with my cancer and not die from it.

Don't get me wrong, my first thought when I was diagnosed was -"Get it out of me!" It's not an easy acceptance process when cancer is chronic, but still being alive three years past when I would have expired without the TKI, really helps.

Studying Fertility

Young adults who have/ had cancer experience some added concerns aside from the normal "am I going to survive?" question. For many people in this age group, they are just starting out. Perhaps getting married and thinking about starting a family some time in the future when cancer shows up. Depending on their doctor, fertility may or may not be discussed. Therefore, fertility may or may not be preserved for that "some time in the future."

It makes sense why an oncologist might not immediately think of fertility when a patient with cancer is sitting in front of him or her. That doctors goal is to save the patient. However, chemotherapy often times destroys fertility. If fertility is not discussed and preserved before treatment, once the patient is through treatment and ready to "move on" with life, there's another emotional/physical struggle to overcome. 

I'd like to direct anyone in this position to a couple of studies researchers are conducting regarding young adult cancer survivors and fertility. The more participants in these studies, the more awareness we can bring. We can make a difference :)

Fertility Information Research Study (FIRST)

Are you a female, ages 18-44 and have had a cancer diagnosis or cancer therapy?  If so, FIRST needs you!  FIRST is a fertility information research study for your women who are facing or have faced cancer treatment.  We want to know how different cancers and treatments affect the reproductive health of young survivors, whether you wish to have children in the future or not.  Participants will be asked to answer a women's health questionnaire on a yearly basis.  Interested?  Call the national fertility preservation hotline at 866-708-3378 (FERT) or email ayastudy@ucsd.edu!

Fertility & Parenthood After Cancer Study

We are conducting an online survey to find out more about young female cancer survivors’ reproductive health and their concerns and feelings toward fertility and parenthood now or in the future.

Who can join this study?

Young women between ages 15-35 who are cancer survivors diagnosed at least one year ago.

What happens if you choose to participate?

You will complete one 20 minute online survey.  You will be eligible for a $20 gift card after completing the survey.

For more information and to participate:

cancer.ucsd.edu/coping/fertility/Pages/studies.aspx#concerns

Boosting Platelet Counts and Juicing

Today a friend asked if I had any suggestions for raising platelet counts naturally. I have recently discovered the joy of juicing and was thrilled to be able to actually offer her some ideas.

Let me start off by saying the idea of a juicer sounded like something my grandmother would use. Therefore, for a long time I wouldn't let my 30-something year old self even consider the idea of having another appliance on our counter top. Especially not THAT one.

Then we watched the documentary "Fat, Sick, and Nearly Dead" on Netflix. The story chronicles the journey of a man who is overweight and dealing with an autoimmune disorder, as he "juices his way to health."

First off, who doesn't want to shed a couple pounds--- so it made me reevaluate the juicer idea. Maybe juicers weren't just for grandmas.

We went out and bought our Breville Juice Fountain Plus (because it was easy to take apart and clean & because we didn't have to chop up the food before we put it in--- it juiced a whole apple without being cut!--- Come on, that's really cool!)

Anyway, we made a basic concoction of kale, green apples, celery, cucumber, some lemon and a bit of ginger root... and it was.... GREEN...

Most juices are not GREEN--- so that took a bit to overcome. The taste however, wasn't objectionable--- making sure it was cold helped. As the days went on, I started to play with the concoction a bit more and add pears and blue berries, and sometimes carrots. The taste improved---but the overall color was still GREEN.

I'm not on a juice "fast"--I know that's trendy for some people right now, but for me I have simply incorporated a juice into my daily meal plan. What I've noticed is what I have dropped from my normal meal plan unintentionally since adding the juice.

The "juice" is actually giving me more energy than my morning coffee did. Weird. So I let go of my morning coffee and replaced it with the "juice." The nice thing is I haven't had that "oh no the caffeine wore off " feeling with the juice. Also, I haven't been craving different "not- so- good- for -me" foods as much. I'm not going to lie and tell you the idea of ordering a big plate of Tikka Masala doesn't sound delicious right this second, but I haven't been wanting cookies and cakes the way I had previously. Hmmmm... juicing.

Then comes all the benefits to someone who has cancer.

I realize as an educated individual I should have made the connection between nutrition and health a long time ago... but honestly I didn't take the time to think about it.

Dark leafy green vegetables, dark skinned berries--- yada, yada, yada--- grandma, grandma, grandma.

Super foods-- improves skin, helps with weight loss, boosts platelets, re-sets your cravings, rejuvenates your body with nutrients--- current, trendy, helpful, something I want!

So when juicing was reframed in my mind, I was willing to try it.

I'm no expert on cancer, weight loss, or super foods, but personally as a novice I can tell you those articles from experts about that list where juicing is concerned might really be on to something.

hmmm... juicing... thanks grandma!

February 4th is World Cancer Day

So I wrote the following as a letter to the editor of the Seattle Times:

February 4th is World Cancer Day. As a person diagnosed with leukemia, ten days after my 30th birthday, I feel the desire to use this occasion to raise awareness. The young adult cancer population, ages 15-39, is surprisingly large. According to the Abramson Cancer Center, each year approximately 70,000 young adults are diagnosed with cancer. The truly interesting fact about this group though, is that its mortality rates have not improved over the last 30 years. Older cancer patients and childhood cancer patients mortality rates have improved significantly, while young adults mortality rates have remained the same. There are many thoughts on why this disparity exists. Often times young adults believe themselves to be immune to such heavy diagnosis, and therefore don't recognize early warning signs. Some young adults do not have solid job positions that offer health insurance, so they don't go to the doctor. Also, according to the Abramson Cancer Center, young adults dealing with cancer are less likely to join clinical trials. Therefore, information on how best to discover and treat these heavy diagnosis within the young adult population is studied less.

If you know of anyone within the young adult cancer demographic who needs assistance, there are a few groups who work specifically with this population. I would encourage you to refer them to the "I'm Too Young For This Foundation" (http://stupidcancer.com/). Every year they have a weekend summit in different parts of the country where young adults with cancer meet eachother and attend seminars specifically designed towards their specific population. This year the summit will be in Las Vegas, NV from March 30-April 1st. For more information please go to http://omgsummit.org/2012/

The more our community becomes aware of young adults with cancer, the more we can do to help.