September 30, 2023

Guide to Understanding Health Insurance Changes for Cancer Patients and Young Adults

It’s super important that we understand the new health care changes that went into effect on September 23, 2010. Why? Because they’re now your legal rights. If an insurance company is not complying with these regulations, you can and should hold them accountable so you get the maximum protection and coverage guaranteed to you by law.

I love the Campaign for Better Health Care and have used their guide adapting it slightly for young adults and cancer patients. If you have additional questions, ask in the comment section below and I’ll bring an expert on board to make sure we get them answered.

Lastly, please forward, tweet, and re-post this Everything Changes blog post widely. (Here’s a link you can just cut and paste Lots of people are understandably confused and I want to make sure that all patients get the maximum coverage we are guaranteed. After all this increased access to care can save patients money and even save lives.

Read on!
Kairol Rosenthal

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Below are changes that apply to plans beginning or renewed after September 23, 2010. For many people this means the provisions actually take effect when they renew their plans in early 2011.

If you’re a YA without health insurance, you can be covered under your parent’s insurance plan up until your 26th birthday. This includes YAs who are married and YAs who aren’t students.

FYI: Young adults that already have a health insurance offer through an employer may not be eligible.

Your insurance plan must cover preventive services and screenings, without co-pays or deductibles. Here are just a few of the preventive services and screenings on the list that I thought pertained to young adults and cancer patients. You can view the full list too.

- Depression screening
- BRCA counseling about genetic testing for women at higher risk
- Breast Cancer Chemoprevention counseling for high risk women
- Cervical Cancer screening for sexually active women
- Sexually Transmitted Infection prevention counseling
- STI screenings for syphilis, Chlamydia, Gonorrhea
- Immunizations for adults – including HPV, influenza, and pneumonia
- For pregnant women:  folic acid supplements, breast feeding support, screening for hepatitis b and anemia plus much more – see the list
- Alcohol misuse screening and counseling
- Obesity screening and counseling for all adults
- Tobacco Use screening and cessation interventions for tobacco users
- Diet counseling for adults at higher risk for chronic disease

FYI: Colorectal screenings were for age 50 and over; mammograms for age 40 and over. However, I suggest you challenge your insurance company to cover these if you are younger and medically in need of these tests. (See below for your right to appeal insurance company decisions.)

“Grandfathered” plans don’t have to comply with this rule. To learn more about what a grandfathered plan is visit FamiliesUSA and read the 4th item under ‘Big Picture’.

Insurers are now not allowed to set limits on your lifetime benefits coverage, no exceptions. This means you will no longer have to worry about “capping out” on your coverage.

FYI: While there are no more lifetime limit caps, there are still annual benefits caps that have been raised to $750,000. These will be fully eliminated in 2014.


Insurance companies are no longer able to cancel your coverage for unjust reasons, a practice known as rescission. 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 deny you coverage; not anymore. This this this applies to all insurance plans.

FYI: If you intentionally commit fraud or hide something on your application, your insurance company can still rescind your coverage.

Your insurance company must give you 30 days notice if they intend to rescind your coverage, in order to give you time to appeal.

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. How this appeals process actually works will vary by state and by plan.

FYI: This doesn’t apply to grandfathered plans.

This applies for children up to age 19. So if you’ve got kids, read this one carefully. Insurers are required to provide coverage to children with pre-existing conditions, such as asthma or hemophilia. This applies to families with group plans and non-grandfathered individual plans.

FYI: Grandfathered individual plans do not have to comply with this provision (though group plans DO), and some insurance companies will no longer offer child-only policies.

These new changes are an incredible step in the right direction for our country. They will help me and many, many people I know. But they will not cover everyone yet, and some patients will still need extra financial support. Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for financial assistance resources for cancer patients.

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  1. Tweets that mention Everything Changes » Guide to Understanding Health Insurance Changes for Cancer Patients and Young Adults -- Says:
    September 30th, 2010 at 9:31 AM

    [...] This post was mentioned on Twitter by Heidi Adams, Matthew Zachary, Planet Cancer, OHSU AYA Oncology, Jamie Lindsay and others. Jamie Lindsay said: RT @planetcancer: VERY IMPORTANT: @kairol breaks down health insurance changes for young adults w/ cancer. Please RT! [...]

  2. Sarah Delaney Says:
    September 30th, 2010 at 4:06 PM

    I am hoping someone may be able to answer my question, I left a job on 7/15 and didn’t get coverage at my new employer until 9/1. I am curious if I need to spend the nearly 1,200 in cobra charges to ensure I don’t get dropped in the future because of a gap in coverage and my pre-existing condition.


  3. christina Says:
    September 30th, 2010 at 6:45 PM

    I just received a notice from my state health insurance plan that they are automatically checking to see if I now qualify for Medicaid. It appears that the new laws have some effects that are not mentioned here or anywhere else I have read. Medicaid in my state has changed some VERY important criteria which severely limited who was eligible (including me until last week).

    If anyone feels they need Medicaid but was told they were not eligible, it may be worth your time to check again now.

    Let’s hope all this doesn’t get repealed next year.

    Thanks Kairol, once again, for all the great info.

  4. Amy Townsend Says:
    September 30th, 2010 at 7:51 PM

    I’m happy for the younger group who has gained some benefit from this. There are many of us out here though that are still fighting to keep private and COBRA coverage going to avoid the 63 day gap for pre-existing condition. I’ve taken a lot of bashing for being in this situation and being against public health care, but honestly, I don’t see public health care working well in other places (Canadians and Native Americans have free health care, yet they don’t use it because they get denied, they have to wait for months, or they receive sub standard care). Again, I’m happy to see they did something for the younger group, but what about those of us who are too young for medicare, don’t qualify for medicaid, and work jobs that don’t offer medical care? What will you do when you’re 27 and working a job without benefits?

  5. Winning Progressive Says:
    September 30th, 2010 at 8:48 PM


    I’m sorry for the struggle you are going through to get and keep health insurance coverage. I know how hard that can be because people I am close to are living with cancer and in the same situation. It stinks.

    You don’t need to be a supporter of public health care in order to support the health care reform legislation that President Obama signed into law because that reform is not public health care. Instead, the reform seeks to make the private insurance system more affordable and fair in a number of ways:

    - It eliminates unfair insurance industry practices, such as pre-existing condition denials and retroactive cancellation of policies, by 2014. So, you will soon no longer have to worry about keeping private and COBRA coverage going to avoid the 63 day gap in coverage.

    - It makes private insurance more affordable by providing sliding scale tax credits to families who earn under $88,000 per year and individuals who earn less than $40,000 per year. Such people will not have to pay more than 2-9.5% of their annual income on health insurance premiums, and annual out of pocket expenses will be limited to between $2,000 and $6,000 for an individual or between $4,000 and $12,000 for a family of four.

    - It encourages employers to provide insurance coverage to their employees by providing significant tax breaks to small businesses who do so, and by requiring large businesses (more than 50 employees) to either provide coverage or pay an annual assessment.

    - It makes the insurance market fairer by creating health insurance exchanges on which people will be able to choose from a variety of private insurance plans that are required to meet various strict regulations. The entire market is overseen either by the federal Office of Personnel Management (which is the same agency that oversees health insurance benefits for federal employees), or by non-profit entities at the state level.

    We can certainly debate the effectiveness of public health care. For example, public insurance systems (i.e., where the government provides insurance), such as Medicare and the French system, are cheaper and more effective than private insurance, and public health care systems (i.e., where the government provides the actual medical services) can work when well funded and administered, such as with the VA system.

    However, we do not need to have that debate with regards to President Obama’s health care reform, which relies on improving the private system, rather than creating a Canadian style public system. Those reforms will end serious injustices in the current, pre-reform system, and makes large steps toward making health insurance affordable and accessible to all. I think all Americans facing health issues or who are concerned about getting or keeping health insurance should thank their elected officials for making major progress toward alleviating those concerns by 2014.

    While the above mentioned changes, and others, have already kicked in, I know it can be an extreme hardship for young adult patients with cancer and their friends and family to wait for 2014. But, If we do not continue to support the health care reform act, we will lose what we have fought so hard to gain and will be back to square one. As the loved one of a young cancer patient, I will continue to support and fight for the steps Obama has taken to improve the system.

  6. Pancreatic Cancer : : Great Resource For Cancer Patients Regarding New Health Insurance Changes - Cancer Health Center Says:
    October 1st, 2010 at 6:40 AM

    [...] It is tough enough to go through cancer treatment but to make the experience more stressful is the need to navigate the mucked up world of health insurance. I remember during my treatment I was living alone and would cringe when I went to the mail box. Luckily I had good insurance but there were still copays and things I had to fight to get covered. I couldn’t even deal. So I would watch the insurance statements and hospital bills pile up on my kitchen table. Recently there have been new health insurance changes that will impact cancer patients and young adults. My friend and fellow cancer survivor Kairol Rosenthal, the author of Everything Changes has a great blog post up with a guide to these new changes which went into effect on September 23, 2010. She discusses everything from insurance coverage, free preventative care, lifetime caps, and pre-existing conditions. It is so important to educate yourself as a patient and be your own advocate! So be sure to check out Kairol’s post here! [...]

  7. Tara Says:
    October 1st, 2010 at 2:21 PM

    I also do feel these initial changes taking places are a step in the right direction. So yeah, kinda afraid of the repeal too..

    Do these first changes solve everything?, of course not, they are just that, the first step. And yea, many people will still be struggling or without coverage, like in the example mentioned above, till the next batch of changes take place. And to me, situations like the ones described above, along with many others, are exactly why people are fighting for healthcare reform. And true, I’ve heard some people from other countries complain about public healthcare as well, but so far, there hasn’t been any other alternatives for people in that situation in this country. So I kind of feel, isn’t better than nothing?

    It might not be the “be all /end all”, but at least it’s a starting point to work off from. If all the rest of the healthcare changes go thru in the next couple years, of course the new system won’t be perfect. I’m sure there will be flaws, problems, etc.. cause it will be the first time they’re undertaking something like that and so of course there will be things that need to be worked out, and that might take a while to resolve. But again, it still seems like it’s a STEP in the right direction. Instead of doing nothing, or sticking to the same stuff that’s not working, at least it’s an attempt to try and address things. I don’t think many people would argue that’s it’s something never again to be modified or evolve.

    And I guess this is the one question I do have, cause I will admit I don’t know a ton about all the details, that’s usually why I don’t say much about this topic, and if I do, it’s only in regards to what I do know, but at the risk of sounding really stupid here…..
    I was under the impression that people who already have healthcare plans that they like, could keep them, they would not be forced to take a public healthcare plan… is that true or not? If that’s true, then I’m having trouble understanding why people are so upset by healthcare reform. If it’s not true… then I can understand why people are so nervous. It’s just sad cause you’d think intelligent people should be able to come together and brainstorm this, and somehow work out a compromise that helps everyone. Ha, but I know, that’s kind of fairytale thinking isn’t it.

  8. Amy Townsend Says:
    October 1st, 2010 at 6:03 PM

    Winning Progressive: Thanks so much for defending your point with integrity and not just all out bashing me. I am definitely FOR healthcare reform. I am, however, against government healthcare (Canadian style). I really just wish they had put some things in place for the rest of us as well. Again, I will say it’s definitely great that they did something for the 18-26 group. Tara there are many reasons that some of us are against government ran healthcare. The first one that comes to mind is reading things like this article:
    I don’t know if I’d want to trust my care to government ran facilities…

  9. Winning Progressive Says:
    October 1st, 2010 at 9:00 PM

    Amy, Thanks for the response. It is always nice to be able to have respectful conversations about important issues that impact all of us.

    I have just two quick points in reply.

    First, President Obama’s health care reform does put things in place for all of us, not just young people under 26. For example, the end of lifetime and annual caps on benefits, the prohibition on retroactive cancellation of your policy after you get sick, and the elimination of co-pays and deductibles on preventive care are for everyone, not just young people, and started last week. The ending of pre-existing conditions denials and other health care reform provisions will also benefit everyone, regardless of age, as of 2014 at the latest (unfortunately, delay until 2014 was a compromise that had to be made in order to get the legislation passed). So, we all benefit from health care reform.

    Second, nothing in the health care legislation creates government run health care. You will still get health care from your private doctor and purchase health insurance from your private health insurance company; it is just that now the government is helping to ensure that your dealings with private health insurance companies are fairer and more affordable.

  10. Kim Says:
    October 2nd, 2010 at 10:50 AM

    Also at the risk of sounding stupid, but wanted to reply to Amy’s and Tara’s comments above. From my understanding, certain states are already starting to offer insurance plans for “high-risk pools” i.e. those with pre-existing conditions like cancer, diabetes, etc. Not sure what state Amy lives in, but if that state is offering such a plan, that might be an option in a situation like hers? (Though, not sure how affordable those plans actually are, anyway.)

    Also, as far as Tara’s question why people are upset about the health care reform even if those who like their current plans can keep them — the problem is, I think some insurance companies are starting to hike rates, citing the health care reform as the reason (b/c if more people need to be covered, it stands to reason they will need to increase rates, according to them). In fact, I think most insurance companies are raising premiums, but certain ones had unreasonable rate hikes, for which the HHS Secretary and Obama administration apparently called them out on it and are NOT allowing that anymore. Sorry if I have any factoids wrong here, I admit I just skim these kinds of news tidbits that I get in my e-mails very quickly, not always completely understanding it all. But that’s what I’ve gathered so far.

  11. Kairol Rosenthal Says:
    October 2nd, 2010 at 11:52 AM


    Thanks for asking this great question. I researched your question and the answer I have below comes from the web site of a health insurance advocacy organization called Families USA. My interpretation of their information is that your gap in coverage will not cause exclusions for you because it was less than 63 days.

    I posted their information below so you can interpret it for yourself too in case you come to a different conclusion than I did. (AKA - I’m not a lawyer and can’t give legal advice.) I have a call into an attorney to get her take on your question too and when I hear from her I’ll post her response for you to read ASAP.

    From Families USA -

    “Creditable coverage refers to health coverage you had previously [prior to this new employer] that meets that meets certain conditions. Under HIPAA [a health care act passed under Clinton still in effect] , whether—and for how long—an employer-sponsored group health plan [again your new employer] can refuse to cover an illness you had before you enrolled in it will depend on how much creditable coverage you have.

    Health coverage is said to be “creditable” if it comes from an employer sponsored group health plan and has not been interrupted by a break of 63 days or more (that is, if the person did not go without coverage for 63 consecutive days)….

    A break of 63 consecutive days or more during which you have had no health coverage constitutes a significant gap in coverage. An individual with a significant gap in coverage loses certain protections (45 CFR § 146.113 (b) (2) (iii)): The coverage you had before the gap is no longer considered “creditable” and will therefore not reduce the amount of time that your health plan can refuse to cover a preexisting condition.

    If you join a plan through a new employer or HMO and have a waiting period before that coverage goes into effect, that waiting period is not counted as a break in coverage.”

  12. Kairol Rosenthal Says:
    October 4th, 2010 at 11:10 AM

    Checkout Additional Options Through Your State

    Christina and Kim talked about other options that may be available state by state. Amy, in addition to the five regulations above, I wonder if there could be some added help for you on the state level. This is a good place for everyone to check out: - There’s a blue box that says ‘Explore Your Coverage Options’. It has a drop down menu for you to select your state. Once you do, there is a series of questions it asks you so it can give you very target information about what is available to you. This is an excellent resource. I hope it helps. I’m going to add this into the list up above.

    Thank you all for your comments. I especially appreciate a dialogue when a group of people are daring and brave enough to say “Hey, I’m no expert on this but I’d like to discuss it anyway.” Our opinions are important whether we are experts or not, and these conversations are a great way to help each other learn more.

  13. Kairol Rosenthal Says:
    October 4th, 2010 at 11:14 AM

    More for SARAH:

    Here’s the response I got when I consulted with a lawyer at the Cancer Legal Resource Center:

    “Well, I think that is only a decision she can make and if she incurred any medical expenses during those 45 days, then she will have to pay out of pocket if she chooses not to retroactively pay the COBRA.

    But if people have a gap in coverage less than 63 days, then they are entitled to use their previous creditable health insurance coverage to reduce or eliminate a pre-existing condition exclusion period imposed by their new health plan.”

    For more information, please feel free to contact the Cancer Legal Resource Center’s national Telephone Assistance Line at 866-THE-CLRC (866-843-2572) or visit;

  14. Jens Says:
    October 4th, 2010 at 11:35 AM

    Among the developed nations, the Americans had the lousiest health care system. No doubt.
    Hard to believe that many Americans oppose the health care reform.
    Obama made the right decision.

  15. Sarah Delaney Says:
    October 4th, 2010 at 4:01 PM

    Thank you so much- I AM SO THRILLED! I will not have to throw 1,200 dollars at Blue Cross for my 45 day gap!

    You saved me!!!!:)

  16. Glenn Says:
    May 3rd, 2011 at 5:05 AM

    In todays climate it is important that Insurance companies hold up there end of the bargain without all the hidden jargon, but I must add is the health system catering for all or just the wealthy. Let’s hope the government can make it a fair system for all people.

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