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Health Insurance After Pulmonary Embolism, DVT, Factor V Leiden, Blood Clotting Condition, Or Preexisting Condition

Problems With Health Insurance

In the United States, health care is very good if you have health insurance. If you do not have health insurance, medical care and prescription medication costs skyrocket. Emergency care is still available as many hospitals will not turn away patients, but, aftercare becomes difficult.

When someone has a pulmonary embolism, DVT, or other major blood clot, it becomes very difficult to buy health insurance. These conditions, the second that they are diagnosed or treated are known as preexisting conditions. This will need to be reported to health insurance companies for the rest of an individual's life. Group health insurance, often through a workplace, if often the best option as there are less restrictions and a shorter time period for historical reviews on preexisting conditions. If this is not an option, there are a number of other options that may cover a person after a DVT or pulmonary embolism.

This hub will cover federal health insurance laws regarding pre-existing conditions, ideas and resources for finding health insurance after a DVT or pulmonary embolism, and my experiences with the options that are available in my state. These walkthroughs should help the reader find his or her own insurance after pulmonary embolism or DVT.

Alphabet Soup: Health Insurance Terms And Definitions

  • GINA: The Genetic Information Non-discrimination act of 2008. This law prevents health insurers from using information from genetic tests in determining your insurance coverage options.
  • HIPAA: The Health Insurance Portability and Accountability Act of 1996. HIPAA places limits on how employers can exclude preexisting conditions; provides new opportunities to enroll in group health plans; prohibits discrimination of employees based on personal or familial health conditions; and guarantees that certain individuals will be able to have or renew individual insurance
  • The Affordable Care Act of 2010: This is a law that is gradually changing how health care is sold and regulated in the United States. It will be fully in play by the end of 2015. Currently, the law has required states to set up high risk insurance plans for individual whose preexisting conditions have precluded them from coverage. Health insurance plans will no longer be able to discriminate by preexisting conditions or gender starting on January 1, 2014. This will mean that people who have had a pulmonary embolism or DVT will no longer be declined for individual health insurance due to a history of those conditions.
  • Preexisting Condition: Any condition that has ever been diagnosed or treated in a patient's past.
  • Creditable Coverage: An individual health insurance policy, COBRA, Medicaid, Medicare, CHAMPUS, the Indian Health Service, a state health benefits risk pool, FEHBP, the Peace Corps Act, or a public health plan that was held for at least 18 months no more than 63 days before the start of a group plan.
  • COBRA: The Consolidated Omnibus Budget Reconciliation Act. This act allows families and individuals to continue health insurance benefits for a period of time after benefits have been lost through a workplace. Typically coverage lasts for 18 months.
  • PCIP: Preexisting Conditions Insurance Plans are plans created by The Affordable Care Act to cover people with prexisting conditions until 2014.
  • FEI: Federally Eligible Individual. An individual who has had at least 18 months of creditable coverage, has had the most recent insurance through an employer group plan, has not been removed from a group plan due to nonpayment or fraud, has not had a break in coverage longer than 63 days, is not eligible for Medicare, Medicaid, or other group coverage, has exhausted COBRA coverage, and has no access to other group health insurance.

Information About The Laws

It is important to note that there are both federal and local laws that govern health insurance coverage. The federal laws always apply but states have different methods of implementing the laws. Also, some of the newer federal health insurance laws will not be fully in effect until 2014. That is a long ways off for someone who needs medical care now.

Group Insurance Plans

There are two generic types of health insurance available in the United States: group plans and individual plans. A group plan is the type of plan that most people are familiar with. Employer sponsored health insurance is an example of a group health insurance plan. An employer based plan is a group plan per HIPAA if it covers 2 or more people. Group insurance plans are sometimes offered by various clubs and organizations.

The distinction between group and individual plans is very important because federal law treats these two types of insurance very differently.

Group plans are subject to a federal law named HIPAA. HIPAA governs how group plans may handle preexisting conditions such as a pulmonary embolism or blood clot. The first thing to know about HIPAA is that it limits the amount of time that a group plan can exclude pre-existing conditions.

  • An employer sponsored health insurance plan may only look back 6 months prior to the enrollment date. This means that the health plan will look to see if the patient was diagnosed or received treatment for the health condition in the previous 6 months. If no attention was given to the condition in the previous 6 months, it cannot be considered a preexisting condition.
  • Group health plans may not exclude a preexisting condition for more than 12 months if the individual joins the group plan as soon as it is available. If the individual joins later than the initial offering, the plan can exclude the condition for up to 18 months.
  • If there was creditable coverage (another group health plan, an individual health insurance policy, COBRA, Medicaid, Medicare, CHAMPUS, the Indian Health Service, a state health benefits risk pool, FEHBP, the Peace Corps Act, or a public health plan) without a break in service longer than 63 days, the NEW insurance company must start the 12 month period while there was creditable coverage. Example: Bob works at a company for 5 years. He has a group plan through work for the entire time. He is being treated for diabetes. He changes jobs and joins a new plan through the new workplace. His fifth year on the old plan is considered the 12 month waiting period for his preexisting condition.

In addition to these benefits, HIPAA also offers individuals some protections in certain scenarios. Special enrollment options are available for people including on separation, divorce, death, termination of employment and reduction in hours, ending of an employer sponsored plan, exhaustion of COBRA, marriage, birth, or adoption. Some of these scenarios will be discussed later in the hub.

Individual Insurance Plans

People can also buy health insurance plans on their own from an insurance company. This is what is known as individual insurance. This insurance is good for people who are unemployed, who's workplace doesn't cover health insurance, and sometimes for those who work for themselves. The challenge is that individual insurance is not regulated in the same way that group insurance is. This has both pros and cons.


  • Individual insurance may cost less as companies can pick and choose their customers. This leads to lower risk and lower cost
  • Individual insurance has more options for coverage and insurance companies. The customer isn't stuck with just what is offered through work
  • Individual insurance comes in a full range of prices. Customers can have emergency hospital coverage only for a lower price or opt for a full feature plan in which they pay little out of pocket but pay more per month for the health insurance


  • Individual insurance companies can decline applications for coverage
  • Preexisting conditions may be fully excluded from coverage or have a longer waiting period before they are covered
  • The consumer has to do more legwork by talking to brokers, insurance companies, filling out lengthy applications, and reading paperwork to insure that he or she chooses the best and most cost effective plan

Individual insurance is not covered by HIPAA in the same way that group insurance does. Despite this, HIPAA does offer the individual health insurance customer some protection. First, under HIPAA, individual insurance that is held for at least 18 months is considered creditable coverage. A person going from an individual plan to a group plan retains the protections for preexisting conditions. Second, HIPAA prohibits insurance companies from canceling or declining to renew an individual insurance plan unless the customer has not paid for service, the company has stopped offering services in that given area, or findings of fraud.


GINA: How A Genetic Clotting Condition Like Factor V Leiden Affects Health Insurance

When an individual has a DVT or pulmonary embolism, doctors may test the patient for clotting conditions (thrombophilias). Some of these tests are genetic tests. These genetic tests may also be given to other family members who have never had a blood clot in hopes that these people will be able to prevent a clot if they are genetically at risk. Hereditary clotting conditions that can be identified through genetic testing include: Factor V Leiden, the Prothrombin G20210A Gene mutation, Protein C deficiency, Protein S deficiency, Antithrombin deficiency, Dysfibrinogenemia, Hyperhomocysteinemia, Factor VII, elevated Factor VIII, elevated Factor IX, and elevated Factor XI.

In recent history, people could have health insurers turn them down for coverage due to an identified genetic condition. It did not matter if that person ever had symptoms. All a person had to do was have a genetic test that showed a genetic predisposition to a disease. Cautious families would have their entire family tree tested for a genetic mutation like Factor V Leiden and find that everyone that tested positive could no longer get health insurance. In steps the Genetic Information Nondiscrimination Act of 2008, also known as GINA.

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GINA prohibits health insurance companies from asking for or using genetic information when determining health insurance acceptance or rates. For a person who has had a DVT or pulmonary embolism, this means that insurance can inquire about the clotting episode but they cannot ask for information about if you have Factor V Leiden or any other hereditary thrombophilia that is diagnosed through a genetic test.

Example: July 18, 2008 the author was admitted to the hospital with multiple, large, bilateral pulmonary emboli. While at the hospital, a hematology consult was requested. The author was tested for a number of clotting conditions. These tests included a genetic test for Factor V Leiden. The Factor V Leiden test came back as positive for heterozygous Factor V Leiden. The author had inherited one copy of the FVL gene from either her mother or father. The author is currently looking for individual health insurance as she is a student and unemployed at this time. Health insurance companies have asked for information about the hospitalization, pulmonary embolism, and subsequent treatment but they have specifically asked that NO genetic test information be shared when the forms are completed. The insurance companies do not know about the Factor V Leiden diagnosis. More importantly, the companies do not want to know about this diagnosis. They only want to know about the blood clots themselves.

COBRA Health Insurance

COBRA is a form of coverage that is offered after someone has lost benefits through a workplace due to voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce, and a few other life events. Companies are typically required to offer COBRA if they had at least 20 employees in the prior year. COBRA allows families or individuals to pay the full cost of insurance and continue services through the workplace health insurance plan. COBRAs are more expensive than workplace health insurance because the insured party is paying the full cost of health insurance. Individuals may be asked to contribute up to 102% of the plan's cost.


  • It is the same health insurance that the consumer had while working
  • Doctors and medications will not have to be changed as it is the same insurance
  • It is full health insurance
  • There is no worry that preexisting conditions like DVT or pulmonary embolism will be a problem
  • If a person has a DVT or pulmonary embolism while using COBRA, it will be treated the same as if it had happened while the person was insured through work
  • It is considered creditable coverage
  • It can be overlapped with other health insurance to deal with preexisting condition clauses on new plans


  • The cost is higher than it was when the workplace contributed
  • It is only for a set amount of time (typically 18 months)
  • It prohibits the individual from purchasing HIPAA plans or individual conversion plans
  • You can ONLY get COBRA right after your benefits are terminated
  • It will end if another full health insurance plan becomes available
  • Smaller workplaces may not offer COBRA

If you have COBRA available to you after leaving a workplace and have a preexisting condition such as a DVT or pulmonary embolism, strongly consider taking the insurance. It is a large cost, but hospital bills, prescriptions, or doctor visits will be much more than the COBRA monthly payment. Also, it will keep the consumer protected from preexisting condition clauses. If a person has a gap in coverage, the new insurance may not cover the preexisting condition. Remember that HIPAA protects consumers who are entering a group plan and have creditable coverage. COBRA is a lifesaver. It is well worth the expense.

The Affordable Care Act Of 2010 And Preexisting Conditions

The Affordable Care Act of 2010 has been in the news a lot. It is very controversial. At the same time, many individuals are excited about it because it eliminates preexisting conditions. Insurance companies will no longer be able to refuse patients because of a preexisting condition. This act is being slowly phased in over a number of years. So far, The Affordable Care Act has created high risk insurance in all states. (This will be discussed in detail below.) In 2014, it will end preexisting conditions. Until then, people who have been declined health insurance due to pulmonary embolism or DVT will have to use other resources that will be discussed below.

High Risk Health Insurance Pools

High risk insurance pools take individuals who have been repeatedly turned down by other health insurance sources. When The Affordable Care Act passed, it established temporary high risk pools as a way to help people with preexisting conditions find insurance until 2014. Before this time, some individual states also had high risk pools.

The plans create by The Affordable Care Act are known as Preexisting Conditions Insurance Plans or PCIP. This federal plan is available in states that do not manage their own high risk insurance pools.

Each state handles high risk individuals differently. One of the best ways to find out how a state handles health insurance for high risk individuals, contact that state's insurance regulatory department. These departments typically have all of the needed information. Another great resource for information about these plans is, a federal site that has links to both state and federal plans.

The high risk plans do have a large downside. Most of them require individuals to be without insurance for 6 months. That can be a very long time when one has expensive medication, treatments, or hospitalization.

Special Enrollment Scenarios Covered By HIPAA And HIPAA Eligible Individuals

HIPAA set up a number of special enrollment scenarios to help people maintain health insurance. Special enrollees will not be subject to waiting periods for preexisting conditions and will receive the full benefits of the plan. Special enrollment kicks in when an individual looses access to a group plan or when certain life events take place. Some life event examples are loss of health insurance coverage due to:

  • Divorce or legal separation
  • A young dependent looses dependent status and can no longer access a parent's plan
  • Spouse's death
  • Spouse looses employment
  • Employer reduces hours and employee no longer qualifies for health insurance
  • Plan changes coverage opportunities
  • Leave HMO service area
  • A health claim meets or exceeds the lifetime limit on all benefits

If the individual meets one of these conditions, he or she may be eligible for some insurance opportunities through HIPAA. Each state is different. Individuals need to research options specific to his or her own state. Some of the possible options are listed below.

Conversion Plan

One of the options under HIPAA is a Conversion Plan. A Conversion plan will allow an individual to change his or her group plan to an individual plan. This option is available if the company is not self insured and if they have a fairy large number of employees.

In order to do a conversion plan, one must determine if she or he is a Federally Eligible Individual. To be an FEI one must:

  • Have had at least 18 months of creditable coverage
  • Have had the most recent insurance through an employer group plan
  • Have not been removed from a group plan due to nonpayment or fraud
  • Have not had a break in coverage longer than 63 days
  • Not be eligible for Medicare, Medicaid, or other group coverage
  • Have exhausted COBRA coverage
  • Have no access to other group health insurance

If the individual is an FEI, he or she must enroll within 30 days from loss of group coverage. Individuals will be eligible to enroll if they are an FEI and meet one of the following:

  • Individual left the employer
  • The covered family member of an insured died
  • The age limit for coverage under the parent's group has been met
  • There was a divorce or separation from the insured.

If everything is in line, the FEI must call insurance and let the insurance company know that he or she is a FEI that is interested in a conversion plan.


Another option that is often available is a HIPAA plan. In most cases, companies that sell individual insurance must offer HIPAA plans. HIPAA plans are available to those who do not have a conversion plan or another group plan. To be eligible one must be an FEI (see above).

Conversion plans and HIPAA plans will be different. The costs and benefits will be different. If both are available, one should receive price quotes and benefits information for each of these types of plans before choosing. HIPAA plans are offered in two levels, a standard level and a higher level with more features. Consumers should ask for information on both of these plans before they choose.

Important information For Both Plans:

In most cases, once an individual becomes eligible for HIPAA coverage, he or she will only have 30 days to enroll. For this reason, it is important to enroll in health insurance immediately after COBRA or other coverage ends. Once enrollment is requested, the plan will start either immediately or one month after the enrollment request is made. In order to avoid a gap in coverage, people may start the enrollment process before losing access to their group plan. This may allow coverage to begin the day the group plan ends.

As mentioned above, states differ in how they handle high risk plans, HIPAA plans, Conversion plans, and other insurance for individuals. Some states have options not mentioned here such as an open enrollment period that occurs each year in which insurers must take individuals with preexisting conditions. Doing an extensive amount of research will ensure that the consumer has the best, most cost effective plan available.

An Example On How All The Laws Fit Together: A Case Study On The Author

The author recently left her full time employment. She had her health insurance through work for sometime. She is a student and will be entering student teaching in a few months. She has a number of preexisting conditions including a past pulmonary embolism, near daily migraines, Factor V Leiden, and allergies. The allergies and migraines are currently being treated. Medication is expensive and with the risk of hospitalization no health insurance is not an option.

She contacted Anthem after leaving work and was declined due to the pain medicine used to treat migraines. Anthem could not consider Factor V Leiden as it is genetic. She was specifically told NOT to list it.

A private insurance agent was then contacted. The agent told her that she would not be accepted by anyone due to the health conditions. COBRA was the best option. Once COBRA is used up (18 months) more options may be available.

A high risk plan is not an option as she would have to go 6 months without insurance.

In Ohio, there is a yearly open enrollment period in January. Companies set aside a block of policies that they sell on a first come first serve basis to individuals regardless of health history. If any are left, they are also available they are also available when loss of a group plan occurs. This will be one option when the COBRA is exhausted. It will also be investigated in January when open enrollment occurs to see if it will cost less than the COBRA plan.

When COBRA is exhausted she will also call the company that is providing the COBRA to ask about conversion plan options. Her former work place was self insured so they do not have to provide these plans, however she will ask as it may be an option.

Another option may be the HIPAA plans. When COBRA nears its end, she will also call other companies to ask about their HIPAA plans for FEIs.

All of these plans will be compared in about 18 months to see which option is best. Also, she will review Ohio's insurance site to learn about any changes in legislation that may change the health insurance options.

Sites Referenced For Case Study:


teamrn from Chicago on May 28, 2014:

We pay a lot for research; which many other countries do, too; if they're offering certain treatments BEFORE we are, but we have those treatments go through rigorous testing at the FDA, before they're approved for use.

Other countries often get around WHAT WE THINK of aa not spending; it is said that their health care is free. They pay for it at the pump and in other taxes. In Germany, is there such a thing as $3 gasoline?

We have the lobbyists and too many players to effectively solve the problems. Is there a way to remove them grin the equation? Like remove union bosses from negotiations? Heck no. But we'd have completely different policies if the insurance companies weren't included in negotiations, but health care workers were.

Lena Welch (author) from USA on May 19, 2014:

I need to update this article as at least we CAN get covered. My coverage options weren't too bad when I looked at the exchange. I started a job though and it was MUCH better than the exchange. That is only because part of my "pay" is my work paying insurance. My solution would be for us to stop using co-pays so that we could actually SEE what we are buying. Have insurance pay a flat % of the bill that WE submit. Next, find a time machine and make the US less lawsuit happy. Then find a way to convince the world that it isn't insurance it is a payment management system. That one is hard as there are lobbyists from many big insurance companies that will prevent that one.

I agree that we don't want to loose our good care. We do want to get rid of the bad statistics though. And we do have them. My guess would be a model like Germany. Germany, France, and Japan are the other hugs for high risk treatments. I also wish we could fork costs to other countries. I suspect that we pay a lot for the research that other countries then partake of under cost controls.

We need better outcomes on premature births, mortality rates, and some other areas and we need lower prices. It is weird that we have great care and horrid overall outcomes all in one place. It does make you wonder how we got here! There are a lot of players too… lobbyists, companies, employees, employees of insurance companies, poverty, lawsuits….. Ugh!

Debra Allen from West Virginia on May 19, 2014:

teamrn I also went through bankrupt too.

teamrn from Chicago on May 19, 2014:

That's the rub. There are so many ways of getting covered that are good/bad/evil incarnate, According to the WHO, the US has the highest (37th it used to be) per capita expenditure amongst the developed countries for health care and but what you get for that highest out-of-pocket expense is the finest care.

A;l the kinks aren't out of the US system of delivering care and sometimes out system is very lacking in DELIVERING that care, but the QUALITY of care that one receives is #1. Why do so many from other countries come to the US for care?

We, here just have to figure our a way to deliver that care in a way that is equitable and just. Everyone know our healthcare needs transformation and needs it big, but nobodyy knows how to solve it. As far as I'm concerned, the big bees don't listen to the worker bees who have a clue. It's a tough nut to crack. a really tough nut, considering there are more than 320,000,o00 people/

Lena Welch (author) from USA on May 19, 2014:

I tend to agree that the $500 or so a month that my employer and myself pay for my healthcare is a subscription fee that is worth the money. The down side is that the US pays more and has less successful outcomes than in other countries. No health system is perfect. I have no answers. There are many types of payment plans that I do not like. In fact, perhaps all of them! :) But, I like my care. It is a shame that malpractice insurance and medical school are so expensive. I don't think those things would fix our expenses but it might help.

teamrn from Chicago on May 15, 2014:

Dear Lady, maybe insurance is a scam, but going without it when you have health conditions that could erupt at any time, is, IMHO, like playing Russian Roulette with a pistol. That part of the pistol's magazine could explode at any time, and you didn't get health insurance-why? Because of pride and the belief that it's a scam.

To me that is like disagreeing with helmet laws for riding motorcycles. So, you don't get and wear one. But, you're involved in an accident. The firm belief that helmet laws violate your civil rights may be true, but you're still the one lying in the hospital bed, paying thousands of dollars a day, possibly hundreds of thousands, as you become a ward of the state and having ongoing medical needs for the rest of your life. Is your belief that helmet laws violate your civil rights going to prevent the bills from piling up, the catastrophic needs that result in your going bankrupt and eventually losing your house, forcing you to live in your car which eventually is repossessed because you can't afford the payments?

When put into that perspective, doesn't that belief that insurance is a scam, seem to be JUST A LITTLE BIT out of perspective and pig-headed?

teamrn from Chicago on May 05, 2014:

I suspect that they never read the letter from my hematologist; or if they did, it ended up in the circular file They have no healthcare background and would only have the 'clotting hygiene' if a doctor told them to. Unfortunately, a sister who is a nurse with a clotting disorder doesn't seem to have the status it takes.

When my mother was ill with an illness that lead to her death eventually, it would seem (because I'm a nurse and have somewhat of a handle on things medical) that I might be the 'go-to' person for clarification of decisions medical Instead, they muddled around in the dark.

Not a question was asked of me in Mom's 16 year battle with complications of Factor V, until it was time for the 'big' decision: hospice or no hospice.

Even, now, that it is known that the mutation was passed down from her (that my hematologist ascertained), to my knowledge no one has been tested or changed a way of life (stopped birth control pills or seen extra importance in stopping the car every 2 hours to walk around, etc) or prior to surgery, informed of a familial history of Factor V. They don't know that they ought to; I tried to tell them and my words got no-where.

Now, my god daughter is approaching a time in her life when she'll be thinking of a family or not, yet. Again, I'll risk relationship with family and ask my sister if she's been tested. She's too special to me as are all my family members. And in a few years, another niece will be there. I can't sit idly by. I could NEVER live with myself, if what happened to me, happened to them.

Debra Allen from West Virginia on May 05, 2014:

I have had 3 DVT's and never been tested. The last one that I had was in 1995. Insurance is a scam and I will not get it.

Lena Welch (author) from USA on May 05, 2014:

My hematologist doesn't believe in testing so this idea varies from doctor to doctor. The best thing is for your family to have good "clotting hygiene" and if they go for hormone therapy, birth control, or surgery to let the doctors know about your history of clotting. Then they can test if needed when the time comes. The doctor was correct life insurance and disability insurance become a problem post test if it is positive. I had have heard that it becomes near impossible to find coverage unless it is through a work plan where they don't look at your health history. My parents haven't been tested but I know that my dad is considering surgery and they want him tested prior to it to know if precautions need to be taken. Personally I think that the precautions that don't raise surgery risks (pressure cuffs for example) should be taken 100% of the time as we only know a handful of the clotting conditions.

teamrn from Chicago on May 04, 2014:

I had a DVT and work up revealed that I also have factoV Leiden mutation which is genetic. My hematologist wrote a letter for me to give to all of my siblings that they ought to be tested (as this is genetic and we have the same parents!)

I presented the letters to my siblings, all of whom had children of child-bearing age. At one point, I asked one sister about what she did, "Oh, I talked to my doctor and he said that if it was found, my insurance rates would go up, so I won't test you!"

I happen to think that was the most irresponsible thing for a physician to do. Yes, insurance rates CAN go up, but don't necessarily; it's more common that health practitioners know that you have/or don't have the condition so they can take proper precautions. If yoyo are going to clot easily (as with FactroV, anticoagulation might be in your future!

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