A Personal Fight for Health Care Reform

It is with the heaviest heart and through many tears that I share this story. My fight for health care reform is a personal one, and one that I feel I need to share.

On July 4, 2009, I lost my brother and my only sibling Eric Alexander De La Cruz. He passed away while awaiting a heart transplant. Five years ago, he was diagnosed with severe dilated cardiomyopathy, a weakening of the heart that prevents it from pumping normally. Since then, we had tried to get Eric insurance coverage that would allow him to get the treatment he needed, but no private insurer would offer him insurance because of this preexisting condition.

My brother and I grew up in Northern California and, though we were a couple years apart, we were always very close.

As kids, we spent all our time on the ice at the local rink. Eric played hockey, while I trained as a figure skater.

As adults, we remained best friends, talking and joking on the phone or over e-mail. We loved trading music and would always keep each other up to date on what was happening in the world of hockey or figure skating. Eric loved the Ducks, and it would crush him if they didn't win. He was a talented artist, music producer, and designer. Most of all, my brother Eric made me see that there is more to life than work.

When Eric's heart condition was diagnosed, our lives changed forever. This past May, his kidneys began to fail and doctors told me only a heart transplant would save his life. Since he was young and otherwise healthy, I thought our chances were excellent.

But Eric did not have the luxury of insurance coverage provided through his employer. His only insurer, state Medicaid, wouldn't cover the out-of-state operation Eric needed. He was denied federal Medicare - twice.

Eventually, when we finally did get federal coverage for Eric, the hospital still demanded private supplemental insurance to help cover the huge expenses. Again, Eric's preexisting condition became a factor in trying to secure that supplemental policy. We were told we might still have to come up with nearly a million dollars.

Medical bills have bankrupted our family. My mother even shared her own heart medication with Eric when he couldn't afford it. With Eric's health deteriorating, and feeling desperate, I began relying on the kindness of strangers.

In May, I started talking about Eric on the social media network Twitter. To my amazement, complete strangers started to come together in support. Within a week, hundreds of donors had raised $6,000 and Eric's cause was being promoted by celebrities like Demi Moore, Alyssa Milano and P. Diddy. Those willing to champion Eric's fight for his life soon numbered in the thousands. Popular bands Nine Inch Nails and Jane's Addiction, as well as professional skateboarder Tony Hawk, helped put fundraising into overdrive. Altogether, "Eric's Twitter Army" raised nearly $1 million in a matter of weeks.

In June, Eric was moved to a California hospital, where he was put at the top of the heart transplant list. It was a happy time for us and we were busy planning for the future. We were looking forward to doing normal things together, like walking his dog Chance and finally getting on the ice again. And every day, I took time to assure him that everything was going to be okay.

But sadly enough, doctors informed me the fight would be hard. In fact, they pulled me aside to say, "You guys got here two years too late." They explained that Eric's battle for a heart should have started two years earlier -- back when we were trying to secure insurance coverage and one by one each insurance company was saying no. The day my brother passed away I promised him I would do two things: take care of Mom and his dog, and try my hardest to change the health care system. I sat by his bedside crying, promising that I would do everything within my own power to make sure that no one suffered again needlessly, the way he did.

Still deeply mourning my brother, I've been trying to fulfill those promises. In August, I flew to Washington, D.C. to lobby Congress for health care reform, arguing that coverage must be available to all, even to those with preexisting conditions, and that insurance companies must be prohibited from dropping sick patients.

At private meetings with lawmakers, I detailed every painful step of Eric's battle. It was emotionally draining, but I wanted every single member of Congress to hear his story. I'm also starting a foundation to raise more funds to help others in Eric's situation, and my mission is to mobilize as many people as possible to help prevent other tragedies like his from happening.

My brother's inability to get adequate health insurance has had a devastating impact on my life. It's broken my mother's heart and has sent the lives of other friends and family members into a tailspin. Being excluded from the health care system because of a preexisting condition robbed my only sibling of his fair chance at life, and it robbed all of us of his gifts, talents and love.

Health care reform may come too late for Eric, but I hope it will come in time to help thousands of other families who may otherwise also lose loved ones simply because private insurance companies choose to turn away the sick, leaving them with no other options. Helping to bring about the day when everyone has the right to health insurance will be my brother Eric's greatest gift, so please, do your part.

The House is set to vote tomorrow on this historic and important legislation. Call your Representative to voice your support. Health care is a basic human right, and should no longer be looked at as a privilege.

Veronica De La Cruz is a former CNN TV journalist currently focusing her efforts on the fight for health care reform in memory of her late brother Eric.

 

Follow Veronica De La Cruz on Twitter: www.twitter.com/VeronicaDLCruz

Comments

[MighteeAphrodite]

Insurance companies are profit-driven and allocate a percentage of your insurance premium dollar on providing health care accessibility.

They must disperse risk by offering less coverage and increasing premiums to maintain the bottom line.

If you are ill or become ill, even while insured, you are no longer an asset to a system that is in business to make money, not cures.

Many of those with disabilities and chronic illnesses cannot afford life-saving treatment or die due to lack of coverage. They can't get the treatment they need before their condition worsens.

Pay out of pocket some say.

One treatment alone, intravenous for certain neuromuscular disorders, for example, is $ 10,000 per infusion.
Costs for scans and lab work alone can be bankrupting, never mind for castastrophic illnesses.

If health care reform shrivels and dies due to obstructionism and bad policy, so will many of the disenfranchised unfortunately.

Don't get sick. Ever.

[danielet]

Veronica, my heart cries for you. Studying to become a doctor like my dad I realized that his education was more art and mine more science. Still, my teachers too applied "cures" blindly. Signs&Symptoms appear late--often too late. Not wanting to practice "too late" medicine, I focused on bio-science. At UC Berkeley I was introduced to two revolutions: students' rights and that of macromolecules, promising science would no longer allow medicine to be "too late" as cellular medicine replaces signs&symptoms driven "index of suspicion." Alas, Pharma decides which way we go and doctors sheepishly prescribe to Sign&Symptoms per Pharma's instructions. There's an explosion of new tools for cellular medicine focusing on fixing diseases before it's "too late." It's a long way from lab-mouse to human use mostly because today's overwhelmed physician is more into ART than SCIENCE of medicine. Retired, I have time to keep up with the molecular science research. Had we applied all the science available a lot of "too lates" would have never been. Obama's plan has us blindly following statistica­lly-derive­d "best practices" as if one size fits all. I promise to fight for funds in the bill so physicians can have time to up-date so it might never again be "too late." Doctors should be paid to again study, bringing more SCIENCE to MEDICINE to replace some of the ART so some day it'll never again be "too late."

[violettefemme]

THIS is America? Unbelievable.

I'm so sick of this, these stories, and the reality of the self-styled "best" country in the world.

This is HELL is what it is, as old, fat white men get to decide what is to be for the rest of us, denying women the health care and choices we need.

I hope it fails, because if it passes, those of us who know what a disaster this so-called reform is will have to hear "you got what you wanted so stop complaining" for 100 years or until the US catches up with the rest of the civilized world.

I feel sick.

[worldlyhick]

Thank you for so bravely sharing your story with the world. My heart goes out to you and your family.

Eric fought his brave fight and did not die in vain. Your speaking out about your family's experience will help continue the efforts to assure that all that can be done, will be done for people having health problems.

My heart goes out to all those who have lost loved ones in such tragic circumstances.

[danielet]

Primary care used to be done by a "general practitioner" with only one year of post-graduation internship. His job was merely to direct patients to specialists. The "internist" with three-and-a-half years of residency was the prince of healthcare because his job was to coordinate the advice of each specialist about his favorite organ, based on the internist's knowledge of the WHOLE patient. Now the latter has been reduced to to the status of the former who disappeared. Furthermore, the Institute of Medicine will establish "best practices" based on the self-serving data provided by Pharma, device makers and hospitals. While internists forced to diagnose and treat each patient in only minutes will feel relieved of liability by best practices, the insurers will soon conclude that nurse practitioner or physician's assistance can follow the Institute of Medicine's "best practice" algorithms more cheaply than the internist. As a result, the revolution in individualized epigenetic medicine will be set aside as mediicne becomes a one-size-fits-all paradigm a la 1950s. The Obama plan thus throws healthcare backwards, not forward into the scientific revolution where we need to be; all patients will be treated statistically rather than individually. Pay internists to study molecular medicine so they can treat patients as individuals, not like lab rats, updating internists on the science, not just the art of medicine, making healthcare cheaper and more effective.

[AQUAPOODLE]

PART 4:
I bet what you are really scared about is sharing of resources. If everyone had access to health insurance based on ability to pay (like the Australian 1.5% of taxes) then maybe you are your family wouldn't be first in the queue for services. Universal health insurance doesn't work like that. People who are sickest get the most priority in the same way as an ER would triage today but everyone else gets reasonable cover too. Here is the point: if I want choice and instant attention for non-threatening conditions, I can get it by paying private gap cover, however if I don't want to or can't pay private gap cover then even with the public system, I still get the same care for life-threatening conditions as people in the private system.

This is fair, reasonable and just. The American people deserve such a comprehensive system and it has nothing to do with socialism, communism or anything else. That is a total red herring thrown out to scare uneducated people. It has everything to do with a wealthy country providing a basic human right to the citizens of the country.

Oh and BTW, the Australian economy is one of the strongest in the world per capita with a low unemployment rate and is often in the top ten places to live for quality of life.

[AQUAPOODLE]

PART 2: An example of a Universal Health care system that works

Let me tell you about the Pharmaceutical Benefits Scheme. The Australian Government negotiates fixed prices for drugs with Big Pharma on behalf of the entire population of Australia. Big Pharma doesn't like the prices the government sets? Too bad, then they don't get to sell to the Australian population. This works just nicely for a population of 25 million people. Can you imagine the leverage, the US government would have with a population that is 10 time larger?

For Ron who complains about paying taxes for other people to get health cover, it is called being part of SOCIETY. To follow your argument to the logical conclusion. You say that you don't want to pay for other people's health cover because you don't need universal cover as a employed person with health cover and VA to fall back on as an ex-vet. OK, so let me take the same argument and apply it to other areas of life... if I don't have kids, I don't want to pay for your children to go to school. If I don't drive, I don't want to pay for the road that you drive on to get to work. If your house burns down or a burglar attacks you, why should I care if the firemen come or the police comes to help you?
CONTINUED...

[AQUAPOODLE]

PART 1: An example of a Universal Health care system that works
From someone who has lived in Australia. It * is * not * that * complicated! Over there, everyone who pays taxes, pays medicare tax which is 1.5%. This pays for universal public health care for everyone - employed or not, retired or not. With this option, you can see a doctor of your choice for free (if they bulk-bill the government otherwise with a co-pay) whenever you need to.

If you need to go to hospital to have an operation, with the public option, you have to share a room and you might not get your choice of specialist. So many people choose to cover the gap or top-up to private insurance that they either get through their employee or pay privately. That way, they get the same sort of choice fully insured people in America get, such as a private room and they can choose their own doctors.

The POINT is, regardless of whether you just have public insurance or if you have public plus top-up private, everyone still gets health cover when they are sick. People in countries with universal health cover consider it a basic human right.
CONTINUED...

[TXfemmom]

My heart goes out to you. Our system is broken and it broke your brothers' chances and his entire famiily. At the same time, we have horrible waste and spending which cannot be justified.

Continue with the fight and let us all not rest until no family has to face this type of situation.

[dr k]

I'm so sorry for your loss. I applaud what you are doing to try to get everyone in the US covered. Your brother's loss of life was tragic and unnecessary--but it hopefully will not be in vain due to all you are doing to make a difference. It seems crazy to me that insurance companies are allowed to make such huge profits when there are so many people who are not taken care of through no fault of their own. Hooray that the house bill passed!

[TheMediaRanger]

Thank you for your efforts, and I hope that time takes the edge off the pain. Ignore the idjits out there, Veronica. We WILL achieve. It's the best way we can honor folks like Eric.

[Barbara Saunders]

One of the biggest ironies in this discussion, for me at least, is people in their 30s and 40s, receiving coverage through salaried jobs, ranting on about "gangbangers" and "illegal aliens" when most of the people I know who are shut out are people in their 50s who've been laid off from that exact same kind of good job.

[ron46032]

It's simple for me. If you don't pay for it, you don't get it. You are not entitled to health insurance. BTW most of your health care is for you to take care regardless of your health insurance. Do you eat right; do you exercise; do you wash your hands and prepare your food correctly; etc.?

If everyone did these things, then ALL of our medical costs would come down. So look in the mirror and ask why aren't you doing more to help instead of asking others to chip in for you.

[Veronica De La Cruz - Huffpost Blogger]

Ron, you have completely disrespected me and my family -- especially my brother Eric. You epitomize what is wrong with this country and continue to get in the way of those trying to create positive change for all Americans. I am doubtful that you know this, but the House passed HR 3962 last night. So step aside...because change is coming.

[ron46032]

HR3962 passed with only 5 votes in a House with an overwhelming majority of Dems. This is a real sorry showing. As the reports from the Senate say, HR3962 is DOA. Yes!

[Barbara Saunders]

Who's talking about "not paying for it"?

Perhaps you are not aware of an all-too-common scenario: If a person works from college graduation straight through to age 52, with insurance PAID all the way along, and then gets laid off -- this person will NOT be able to get insurance if he or she has a medical condition. And yes, a person can eat right, exercise, and wash his hands and still develop a medical condition - perhaps even one that is work related -- carpal tunnel? I once had a client who developed a serious back injury from the repetitive movement patterns imposed by a cramped office.

The very reason for paying insurance for 30 years is so that when you are 52 with a back injury, you HAVE paid and get the treament you need.

Maybe it's the circles I run in, but I know a lot of people in this situation and not a one gangbanger!

[LeighAnnes]

I'm very sorry about your loss and the fact that we have a system that allows it.

[berrysmart]

Do you really believe that a Gov't run program would pay for your brother's transplant??? I mean, if Medicaid said they wouldn't pay----why would further Gov't run programs pay? How is the monstrosity that passed in the House going to lower the costs for transplant?

My heart goes out to this young woman who lost her brother----how awful to watch a young and formerly healthy brother decline and die. But this story is simply smoke and mirrors for this argument. They couldn't afford a VERY expensive procedure---he had Medicaid! Health Insurance Reform isn't going to lower the cost for this operation----in fact, it might not be available anymore under a Govt run program because now you are looking at very expensive follow up care and immune suppression for the rest of your life with a new organ, not to mention the OTHER health conditions created by taking immune suppressing drugs and the costs of those. And let's not forget----there might be someone EVEN sicker that this young man who would have been first in line for this operation and he still would have had to wait......­..........­We have just opened up a new Can of Worms with the House bill passing. Just hope this PARTICULAR bill doesn't pass in the Senate. More work and consideration needs to happen before we do this......­..........

[Veronica De La Cruz - Huffpost Blogger]

You are missing the point entirely. Had private insurance been available to Eric in the first place, he would still be here today. His health would never have deteriorated to the point it did because he would have been eligible for transplant YEARS earlier. Now please, out of respect for me, my brother and my mother who still cries every day for a child that she has lost...I beg of you, lerosn and Ron to go and post ELSEWHERE. Have you no couth?

[ThriceLuckyCanuck]

People like those, who are able to be so casually dismissive of others' pain, are soulless and unfeeling. Their arrogance is only exceeded by their ignorance. I find it utterly beyond belief that people can spread such disinformation in order to get people to rail against, and even vote against, their own self-interest. To scare old people especially to fight against that which is helping them is beneath contempt. Please do not take these cretins to heart.

[berrysmart]

Veronica---again, I truly am sorry for your loss. But my question is a valid one----will Govt run healthcare actually pay for million dollar surgeries? If they do---will it pay for everyone who needs one, or just those deemed 'worthy' enough? You know---I do understand the plight of your family. But I will add a twist to why Health Insurance is not always the answer to survival. In 2005, my dad suffered a rupturing aortic aneurysm, was lifeflighted to a hospital for surgery, 6 weeks in ICU, then rehab. My dad miraculously survived something that most people don't----John Ritter for example died of this. But in a lot of ways-----the Ritter family is lucky they aren't living with the ramifications of Heroic Healthcare----my dad suffered multiple strokes during surgery that have left him incapacitated---he used to be literally a brilliant mathematician teacher---and permanently disabled. He recieved such horrible care at the rehab facility--­-including his sternum coming apart because they didn't take proper standard precautions AND picking up Hospital Staph in his aortic graft. None of this was picked up in the hospital until he was transferred to near my home 3 states away----the doctors were absolutely appalled at what they found! Continued....

[berrysmart]

When we had health insurance with my husbands job (we don't have health insurance now), why didn't our constant trips to the Dr. with a child with constant stomach aches not result in the diagnosis 'I" had to make of Celiac Disease? 2 years ago---we paid out of pocket for out daughter's tonsillectomy. At the surgery center in Montana, there was a father with his young son from Canada that came down to the USA to pay out of pocket for a shoulder surgery because the wait for his son to get help not only had been years, but they were STILL on a waiting list because his son's elbow not staying in its socket was not considered life threatening---AND they didn't have the specialist who could do this particular 1-hour surgery in Canada. This type of rationing and Govt deciding who is worthy WILL happen with Govt run care.......to rein in costs, it has to.

Read more at: http://www.huffingtonpost.com/veronica-de-la-cruz/a-personal-fight-for-heal_b_349045.html?show_comment_id=34170850#comment_34170850&cp

[Veronica De La Cruz - Huffpost Blogger]

A. I find it interesting that you have never posted on HuffPo before today

B. If you are so vehemently opposed to this bill and claim to have read it, you need to back up your argument WITH FACTS. Otherwise, the only people on this board in opposition are you and Ron, and its obvious that you are both shills for the insurance industry.

[ron46032]

Let's see. Fact 1, there is nothing in the Declaration of Independence, the Constitution, or the Bill of Rights that "entitle" you to health insurance.

Fact 2, to make health insurance affordable (whatever that means), some or a lot of people will get their medical insurance subsidized by other people. This is called Socialism.

Fact 3, the majority of health care issues that most people in the US are prevalent because of our lifestyle. We eat too much. We don't exercise enough. Check out CNN, Google, WebMD, and the CDC for verification.

Fact 4, more people die in auto accidents than because they don't have medical insurance (see CDC for causes of death and compare to figures sited in reports from CNN).

Fact 5, the vast majority of Americans (85%) have adequate to good medical insurance (again see CNN for collaboration).