Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Saturday, January 8, 2011

Scared to Death

 I'm afraid again.

I'm scared. I'm scared with the type of fear that keeps me up at night with my heart and mind racing with anxious thoughts of how I'll survive.

It's the fear I experience when I know my life is on the line, when I'm confronted with a relapse or a new therapy. I'll find myself staring into the air, lost in my thoughts, hiding in the bathroom so no one sees the stress or the tears.

I'd thought I was safe. I thought I had been thrown a lifeline, but now, that lifeline is in jeopardy.

I thought I would be able to receive treatment for my cancer indefinitely.

I thought I'd been granted the freedom to fight my disease for as long as my body could handle.
I'd finally allowed myself to believe I could live another decade pushing my cancer back, keeping it contained, keeping it at bay.

But now, again, my life is threatened, not by my cancer, but by the knowledge that insurance payment maximums could be reinstated by a possible repeal of the Affordable Care Act (ACA).

I have a 2 million dollar maximum from my health insurance that was repealed by ACA. If this is again put in place, my health insurance will tally my costs and stop paying for my care.

Overnight hospital stays are $1380. My chemotherapy alone can be upwards of $8000 per infusion. This does not include any of my other medications. Zofran, an anti-nausea drug created specifically for to prevent chemotherapy induced vomiting is over $750 for a 30 day supply.

I all ready spend $20,000 yearly, the entirety of my social security, on health care costs.

I'm depressed. I'm reaching for my chocolate.

I was all ready depressed today, because I came across the perfect pair of glasses and fell in love, only to realize they were $300, and my insurance only covers new frames every 24 months and new lenses every 12.
I've been driving myself crazy looking in the mirror, watching my face swell, slowly losing my dimple from my prednisone induced moon face, and having to wear glasses that don't fit anymore.

Then I started thinking about all the treatments I've wanted to undergo and had to bypass due to my inability to pay, all the doctors I've wanted to consult for the newest innovative treatment ideas, none of which are covered by insurance, because though their used abroad successfully, have not been approved by the FDA.

Having to ration care due to cost is something I never thought I'd be confronted with, but I am. The most promising of treatments for my refractory disease: hyperthermal radiation or a personalized vaccine could bankrupt my family.

For those of you who are anti-reform due to fears of rationing, rationing is all ready occurring. It occurs everyday due to spending and hiring freezes in hospitals due to uncontrolled inflation in healthcare.

The year prior to ACA, health care costs rose on average 28%. Since the implementation of ACA, inflation in healthcare has been 7%.

There is no arguing those facts. Something changed in the past year, and the biggest change has been the passing of the ACA. Cost containment due to the ACA is something that is benefitting all Americans, but the ACA may have done less  to protect the sick than many think.

 It has allowed children to stay on their parent's insurance plans until 26 years old.
Children, under the age of 19, can not be denied insurance due to pre-existing conditions,  but those older than 19 (aka me) may or may not have the option of high risk pool insurance.

Only Thirty-three states have high-risk pools.

FYI- NAHU's Health Care Coverage Options Database can tell you if your state has a pool, provide you with contact information for that pool, and also tell you the basic participation requirements.

If your state doesn't have a high-risk pool, well, you could be screwed.

 Twelve states use other means to provide coverage for medically uninsurable individuals such as requiring that all individual policies be issued at least part of the year without regard to medical condition (so you can be treated for your cancer, MS, or diabetes for 6 months of the year), coverage can be provided through a designated carrier of last resort, or coverage through a reinsurance pool. 

The remaining five states have no means of providing individual market access to people with catastrophic medical conditions. High-risk consumers in those states may have trouble obtaining coverage. 

These are the people that are still screwed and I suggest you move, but even that may not help you.

Soooo since the high risk pool was implemented to help those experiencing a health care catastrophe, you'd assume it would also be affordable? 

Wrong again.

Risk pool health insurance is more expensive than traditional individual insurance. Pool members, by definition, are those who are considered to be medically uninsurable. State laws generally cap risk pool rates between 125-150 percent of the base individual market rate
Example: If the average standard individual market base rate in a state for a 30-year old male is $100/month, a medically uninsurable male of the same age would pay $125-$150/month for comprehensive coverage in a risk pool.

After discussing my options with my husband, we decided not to go forward with other possibilities for my treatment since it would threaten our way of life, possibly bankrupting us.

I've been fortunate to have conventional coverage, but if a maximum is enforced, I would likely die due to inability to pay.

If I don't die, my house would have liens placed on it. My car could be repossessed. Then how would I travel to treatments? Where would I go to recover after my treatments?

And speaking of my husband, I've often wondered what would happen to me, or any other woman in my situation, if he was abusive, and I wanted to leave the marriage. 

I thought The ACA had given women the option of health care independence. I thought it had given people the option to secure affordable insurance independently and affordably outside of a companies' insurance.

I'm at J's mercy as the holder of our family health care plan.

If I were to ever leave, I'd have the option of negotiating that he maintain my health insurance through his current insurance plan. I could have it placed in our divorce decree, but that doesn't gaurantee that in a situation like separation a snubbed spouse may allow the plan to lapse sending the sick ex into the abyss of being uninsured with a pre-existing condition.

Losing insurance coverage is a fear as great as a severe cancer recurrence, because losing coverage would send me into the impossible abyss of looking for insurance with a pre-existing condition.

I'm classified as uninsurable. I had thought that the ACA had repealed this form of discrimination for all of us, allowing freedom and hope for those that have more problems than just disease, but at least the children are protected.

Please don't allow that to be taken away.

The U.S. House of Representatives' vote to repeal the Affordable Care Act (ACA) has been scheduled for January 12. Please take the time to support the ACA. Sign petitions at or join NH voices for Health.

1 comment:

stonepost said...

Hillary this so deserves a comment, I had to install a gate today and wasn't here! I am soooo lucky that my wife has good insurance and my $130,000 was mostly covered. It cost me $1,000 onle. That is the "Cadellac policy". Here is the worst case scenario and I have seen it severa times. It is the guy with the good job and good insurance who gets cancer, Half-way through treatment he becomes too ill to work and loses his job, therefore his insurance also. Where I had my treatments is a for profit organiztion: no insurance or no money equals no treatment. He is removed from the program in midcourse. Happens all the time.
Americans pay the most per capital on health care than any country in the world and there are 33 countries that do a better job than we do. We need National Health Care, not National Insurance! I could go on and on about this!!! I am 100% in favor of National Health and I don't even need it. Unless my wife got sick or lost her job! We are a selfish greedy people and we won't even admit that National Health Care would be better and Cheaper!!