Reflections on ACA Implementation: We Must Do Better

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You might have heard President Obama use the phrase, “health care is a human right.” in recent days to demonstrate his argument against defunding Health Care Reform.  Even though this less-than-perfect Health Care Reform begins today in spite of the government shutdown, what really grates is to hear this phrase being used now, when the very value of health care as a human right was ignored the President and the other architects of the Affordable Care Act when they threw out single-payer health care (an option for really nobody to go without health care) as a viable option for the people of the United States. 

While the single-payer health care movement does push on, continuing our 100+ year journey, what we are left with in the Affordable Care Act (ACA) will be implemented today, October 1^st, 2013. 

As I mentioned earlier, the law is certainly less-than-perfect, especially because all it essentially does is increase profits for morally bankrupt health insurance companies.  However, since we are moving forward, I’ve looked a bit more into the details of the ACA, and realized there are actually some pretty exciting things packed in which are worth discussing.

The first to me is this whole “no pre-existing conditions” piece.  As you may know, if you’ve ever looked into purchasing health insurance yourself, a middle-aged person who has diabetes would have been more likely to be denied coverage (or charged much, much more) than a young, healthy 20-something.  In a similar vein, there used to be caps/limits on how much insurance companies would cover services/medicines for people with chronic conditions that the companies feel are too expensive to cover – like cancer, heart disease, diabetes, hemophilia, mental illness. Seems a little counter-intuitive if we’re really trying to protect the sick (that rely on this continued care), no?   Anyways, that is all actually gone now.  Under the ACA, insurance companies that participate in the health care exchanges must only use age, where you live, and whether or not you smoke to determine health insurance prices.  They also cannot deny or charge exorbitant rates to those who have a “pre-existing condition” like this.   

Finally, again on a related note, health insurance companies in the Exchange cannot charge a “co pay” for preventive services like mammograms, colon cancer screening, glucose testing, etc. This is huge news for the South Asian community, where we are 7 times more likely to have diabetes than others in the US, and cardiovascular health, HIV/AIDS, breast and cervical cancer screening rates remain too low, mostly due to an inability to pay/lack of insurance coverage for these preventive services.

It’s actually embarrassing that this advancement is only coming now, but picking up on the thread of “pre-existing conditions,” guess what isn’t a pre-existing condition anymore under the ACA?  Being a WOMAN.  Yup, us women of “child bearing age” would routinely and very expectably be charged a higher monthly premium than men, all other things equal.  While I suspect we’ll get no more than a “big whoop” from eco-feminists like Vandana Shiva for this ‘advancement,’ hey, we’re moving forward!  Yay.   So, women cannot be charged more than men.  And of course, since our primary function continues to be defined by society as baby-makers -- insurance companies have to cover maternity care and breast-feeding supplies.  Now, if we could only get insurance companies to have to cover the cost of other crucial things women need – such as interpretation services and translated notices, sex reassignment surgery, and care for our immigrant sisters who have been in the country less than 5 years or are undocumented.

Since I mentioned interpretation and translation in the last paragraph, let me also acknowledge that it is a great thing that the ACA actually mentions cultural and linguistic competence, something many of us have jumped up and down about for years, in a few different areas – including providing funding for cultural competence training, and, excitingly, community health navigators.   However, we have yet to see how this will all shake out – will all states’ health care exchanges follow NY’s example and reimburse providers for the cost of interpretation and translation?  That is the only way (sadly) to get medical providers to really expand this life-sustaining service.  Will there be standards issued/incentives provided for bilingual health navigators for immigrant communities?   Will they actually lower the required threshold before having to translate health insurance notices (which, admittedly, are hard to understand as a native English speaker) to a more realistic level (currently, 25% of the enrollees need to speak the same non-English language in order for the company to translate their appeals notices into that language)?  

Also, since I mentioned immigrants in the paragraph before last, let me just yell and scream again in advance of anybody saying that the ACA ensures nobody will be left uninsured.   Arrrrrghhh!!   First of all: factually incorrect on many levels.  30 million people in the US will still be left uninsured.  And to add insult to injury, guess who subsidizes the cost of public health programs YET is not allowed to receive health care services through the very programs they pay for?   Yep, IMMIGRANTS.  For all ye liberals who like to drone on about how far we’ve come with the ACA, I ask one simple favor of you today: try not to get too excited yet.  Immigrants make it possible for Americans’ health care costs to be covered -- $10 billion (yes, that’s a “B”) was paid into the Medicare Hospital Insurance Trust Fund in 2009 by noncitizens.  Many of my friends who worked on the passage of the ACA work primarily with immigrant communities, and yet this point is not raised nearly as much as it needs to be, I feel.  Even though the famed “health care exchanges” are supposed to function as a marketplace where anybody can use their own hard-earned money to purchase a health insurance plan, the  marketplace will not accept the dollars of undocumented folks and folks who have papers but immigrated within the last 5 years.  Remember how I mentioned the high rates of cardiovascular disease and disturbingly low rates of screening for these and other conditions?  It’s not just South Asian immigrant communities that don’t screen for these.  Immigrant communities in general don’t get these tests done – and therefore end up having these chronic conditions get worse and worse, and therefore end up in the emergency room or at a point of no return which costs WAY TOO MUCH to care for – so much so that I know one too many immigrant families who have been bankrupted in the process of paying for cancer treatment, etc.  Well, yes, the fact that insurance companies charged for preventive services before was a factor contributing to this devastation, as was caps on services – both of which, thankfully, have been addressed by the ACA, sure.  But the other factor is immigration status itself.  This has NOT been addressed by the ACA.  Maybe insurance companies won’t charge co-pays and won’t have caps on services, but what if you’re not even allowed to purchase the bloody insurance plan?!  Yes, I know there is Emergency Medicaid.  But don’t even get me started about the hoops one has to go through to get this program to cover cost of care for needed services like chemotherapy and radiation.

There are a few things to feel proud of, yes.  The fact that Medicaid coverage has been expanded in most states, that you can receive tax subsidies to help with the cost of health care premiums under the exchanges, that small businesses and non-profits (with under 25 employees with average wages less than $50K) such as Many Languages One Voice, which offers full insurance coverage to its employees, can get a tax credit, that health insurance companies participating in the exchanges cannot discriminate based on sexual orientation or gender identity (holding my breath to see how this actually gets practiced by providers), and that dental services for kids will be offered through the exchange marketplace.   

However, I am saving my glitter and fanfare for the day we as a country can truly start to say we care about ALL our residents’ (yes, that includes IMMIGRANTS) health – the day we truly realize health care as a human right: the day when single-payer health care is a reality– which sadly, is not today, October 1^st, 2013.

Cultural (IN)competence

I'm cutting and pasting this from my previous blog, because I think it belongs here. originally posted it in December of 2006, but unfortunately still feel just as angry about this experience!

Cultural (IN)competence

I'm still reeling from my experience with the last training in "Delivering Culturally & Linguistically Competent Care" at a NYC hsopital today. These trainings are usually 3 hours long, and we deliver them to staff of hospitals - from security officers to senior doctors - at the request of HR departments that are fraught with lawsuits for previous discriminatory occurences.

I don't even know where to begin. Just about every right-wing, republican, immigrant-hating, uninformed, ignorant, racist, stereotyped belief one can imagine was uttered at some point during this training, which was attended by all those in this hospital that was putting off the Cultural Competence training.

At one point I just felt like breaking down, holding my knees and burying my head between my legs. I couldn't take it. Que horror.

They hurled everything from "well they don't pay taxes - so why do they deserve health care?" to "why isn't there a law that forces people to speak english?" to "well then tell them to get documented" at me. A whole big group of them sitting in the back of the classroom - mostly EMT workers - wonderful to know that when a Mexican calls an ambulance its one of their racist asses that is going to pick them up.

There were a couple "sympathizers" - a doctor in the back of the room that contradicted a doctor in the front of the room that insisted "nobody is ever turned away from this hospital" by reminding the group that things like Emergency Medicaid doesn't cover everything that could go wrong, and if the undocumented patient has diabetes, or cancer, or a mental health issue that's "non-emergency" then they will and THEY HAVE been turned away – in fact, from the very facility that I was training at. Another guy (that, by the way, bore an uncanny resemblance to like Jerry Springer) - with some button that i think had a liberal slogan on it - reminded everyone that: 1) nobody is "illegal", 2) immigrants do pay taxes, 3) undocumented immigrants get taken advantage of BY the system because its easier for their employers to keep them undocumented and keep paying them under the table and 4) people may especially have a hard time wanting to help undocumented immigrants b/c it doesn't help that their skin tone is generally brown.

I wanted to hug him.

I tried all i could, and I was literally at some points having to shout at them to keep all hell from breaking loose, because folks were yelling things, being so rude, not at ALL listening to what i have said nor reading the slides it seemed b/c they would constantly repeat a question i had already covered or ask a question that was already answered by the data i had presented. One can imagine how long it took to get through this slide which talks about how much immigrants contribute via payroll taxes. Oy vey.

I shouldn't take all this personally, but when I read the comments at the end of the session, they said things like "this was just liberal propoganda" or "too much political correctness". Why is it that people aren't willing to at least dialogue? This reminds me of when Al-Jazeera English launched in the US, and folks were calling in to NPR saying that they didn't want a "terrorist" station, a "biased" news source in this country --- isn't all media biased? So a point of view other than yours is being expressed --- listen to it, you don't have to agree, but then DIALOGUE and present your points. They sat there and went on about how the hospital is bankrupt because of immigrants, how the health care system in this country is suffering because of immigrants, without any real numbers to back up their claims. I told them to read the facts --- that that is clearly NOT true. I quoted articles, studies, I showed them stats on sales & income taxes, I spoke to them about how people contribute and how all deserve to be treated, and the SYSTEM is what we need to fix, not those immigrants. they don't want to open their mind - they don't want to know the facts. so then what do we do???

I sat there and heard all their discriminatory rantings and their frustrations --- now, I KNOW its difficult to do what they do, to be out there every day on the ambulance or in the hospital and answer to the needs of all these patients - many of whom they can't communicate with - many of whom THEY see getting all these "perks" in life, and they insist that despite their frustrations, they treat all the patients the same - like family.

But don't the poor, the undocumented, the non-white members of our family have to suffer their attitude on some level? Can't they feel the frustration, the envy, the scorn, on some level? Especially when it comes to voting - and when the poor, undocumented brown voices are not heard and what IS heard (because its all that CAN be heard since many that we are fighting for don't have voices) is the voice of the privileged, middle & upper-class, white, English-speaking, frustrated-with-immigrants (when they should be frustrated at the SYSTEM) workers like these???

So then i ask, those of you that have read this far and are also sympathetic: what can we do? there must be a way. There has to be some way, besides 3-hour long sessions where people are unwilling to hear what we have to say anyways, that we can inform people of the contributions immigrants make, of how much they pay in taxes, of how little of the health care system they actually ever get to see, how high their uninsurance rates are, how much they want to learn english but can't because they can't get past the 200,000 people ahead of them in line for ESL.

Do we have to write more "the health-of-immigrants" articles in the local papers, indicating immigrants' contributions along with their barriers? Pass around pamphlets? Speak to politicians? I mean, yes, of course we can do all this -- but is this enough? And if not, then what is the answer??

Help, friends – I know together we can find more answers...

What is "health" anyway?

So I've gotten into a few little skirmishes recently with folks I'm partnering with on projects, both of which had me saying "but that is health" somewhere along the way. Got me thinking about how "health" is defined by various people and how that definition leads us to do certain things, and to do those things in certain ways.

The first incident involved advertising a community health fair event. We were at a meeting of partner organizations, sitting around trying to design the flyer that would advertise the health fair, putting together language that we thought could appeal to community members, and that would cover the comprehensive array of services that this event would be offering.

Without giving it a second thought, I blurted out, "oh, and legal services..." in response to the question, "so what else should the flyer say?" This was especially considering that this community health fair would include not just medical screenings but also booths with community based organizations offering what are typically referred to with the catch-all umbrella phrase of "social services" - and that those services are not only in great demand, they are much needed by members of our community.

To me, telling folks that they could come to our community health fair event and also have legal questions answered - whether its about if they would be labeled 'public charge' if they used Medicaid, or how long it'll take for them to sponsor their mother from Bangladesh - made a whole lot of sense. So much so, that I was frankly stunned when another person at the table retorted,

"but that's not health! This is a health fair."

I'm not sure whether it was her insisting on distinguishing 'health' from 'legal' services, compartmentalizing and not wanting these two to mix (nor understanding why I insisted that they overlap quite a bit), or it was my own (relatively) newfound stubborness in seeing practically every aspect of life (social, political, legal, educational, spiritual, psychological, sexual, etc. etc.) as tied up and intricately connected to that thing we call 'health' that rendered the third person in this conversation essentially tongue-tied.

All she wanted to do was finish with the darn flyer. But this simple point - whether or not to advertise 'legal services' as part of a health fair, had struck a deeper chord in me, and I was not about to let it go. This was of course further complicated by the fact that organizations that organize and therefore advertise their health fairs have at least two aims: 1. to glorify their organization, at the same time protecting it from any liability and/or responsibility and 2. to let community members know about as many different services as exist out there, even if their organization doesn't offer that service, and even if the individual that sees the flyer for that health fair doesn't come out that day - at least they know its 'out there' if and and when they need it.

The thing is, legal services, especially immigration services, are a huge part of what I think health should be defined as. I will never forget this experience I had leading a workshop on cervical cancer for Pakistani immigrant women here in NYC. I was so proud of myself, having gone through a role play in Urdu, discussed with them what pap smears are, explained why its important to get one, and answered all their questions. So, at the end of the workshop, when I asked, “so what health topic should I take up next time?” and they said, “baji, can you please talk about immigration?” it was a completely humbling moment. Of course immigration is a part of health – one can’t think of getting a pap smear if they are afraid they will be deported tomorrow!

Likewise, other social services, like housing, child support, adolescent development, domestic violence, parenting, etc. that many amazing South Asian organizations out here in NYC (and beyond, of course) provide, to me fit under that umbrella definition of health which I am keen to promote. Just this past weekend, I was asked by the organizer of a large community event to arrange for a “Health Fair” portion. Since she put this job into my hands, I decided to invite organizations that I we work with, all not necessarily “health-defined organizations” for many reasons, but important, nonetheless, in my eyes as offering services that are part and parcel of what a “Health Fair” event reaching thousands of South Asian immigrants should be. The day before the event, I get a call from this organizer, to whom I had just emailed the final list of attendees (i.e. organizations taking part). She was upset about two things: HIV/AIDS education and Youth Services. Now the HIV/AIDS education piece she thought was “inappropriate” while I thought it was totally important and therefore more than appropriate for a large gathering of a community whose HIV testing rates are abysmal (a topic I hope to discuss in a separate post). The Youth Services bit though…you won’t imagine the response I got:

“this is supposed to be strictly a health fair.”

That was her objection. Imagine, that somehow making sure that South Asian youth are given healthy, supportive environments to grow up in is not somehow part of our community’s health – I couldn’t even describe what they do without using the word “health”! What she should have said is that she was looking for a “medical fair” – even though I suppose some of those in the medical profession may also argue that 'allied social services’ are essential to their diagnosis and full professional treatment of patients.

There is another aspect that I think many in public health would agree is a part of that definition of health, although I have somehow come across problems recently. In planning this same health fair event this past weekend, I was speaking with a dietician about providing handouts on Diabetes in about 4-5 different South Asian languages, based on the languages commonly spoken at our events and the proportion of those language speakers who are limited in their English ability. Her response, after insisting that:

“everyone who lives here can either speak Hindi or English,”

was

“information without education is dangerous.”

This shocked me on so many levels.

Firstly, of course she is incorrect in saying everyone here can speak either English or Hindi. We have a large South Asian immigrant population that speaks neither, and those are the individuals attending our events – of course Urdu & Hindi are essentially the same spoken, so the folks I’m considering are most commonly Bangla, Punjabi, Nepali, Gujarati, and Telugu speakers. Not to mention that even IF she was correct, it still doesn’t account for the high prevalance of illiteracy, especially health illiteracy, in our communities. So giving a handout on Diabetes to a Bangla speaker that you think can ‘speak enough Hindi to understand’ is not going to be very useful – 1, if they don’t read Hindi, or 2, if they don’t read.

Which brings me to her ‘information without education’ point – she’d rather that people not get information if they are – as she calls them, “uneducated.” In other words, if they can’t read at all, or they don’t know Hindi or English, they are uneducated, and therefore don’t deserve the handout on Diabetes anyways. I realize she may have a fear about self-diagnosis, which I also share, but isn’t giving information – whether spoken or written – actually a way to create a more educated society, especially for those that didn’t have the privilege of receiving a formal education?

This whole altercation made me think of a couple other things I would throw in to what belongs under that fabulous health umbrella: Language Access, Literacy, Legal & Immigration services, Youth Services, Women's Rights, Intimate Partner Violence, LGBTQ Rights, Education, etc. etc. Many of these are also essentially surrogates for, or somehow associated with, Socio-Economic CLASS, something I plan to explore much more in future blog postings.

Introduction

For quite a while now, I've been trying to figure out how best to talk about Health and South Asians, two topics that seem to have taken over my mind and heart for the last several years, with as many people as possible. And then a friend suggested the most obvious answer for this century: blog about it! And here we are. With a not-so-creative title (which hopefully will change when I feel more creative juices flowing) but hopefully a space with interesting and provocative ideas which will make some of you want to engage and work with me, or at least work with South Asian communities to fight for better health and health care access!

To give you all a sense of where *I* happen to stand, let me share with you a quote that I happened to come across today, printed in a peer-reviewed medical journal: "Patients of South Asian ethnic background...present a special management challenge...health care delivery in this population is more challenging because of the cultural, communication, and comprehension difficulties...along with social deprivation..."

Now whether or not doctors find it 'challenging' to treat South Asian patients, its the very tone of this quote that strikes me as problematic. That the patients are presenting a challenge. As far as I'm concerned, the real challenging thing is the health care system, not the individuals who come seeking services from it. I'd say that rather than health care delivery being challenging, its health care access that's the real challenging thing. Yes, there are "cultural", and communication barriers, the onus of which should lie on the system to address and fix, not the patient.

I say all this because I'm trying to see seeking health services from the point of view of the seeker rather than the provider. And maybe that's because I'm not a health care provider. Hopefully, however, my views on this give you an insight into what I hope this blog to be about -- a space to discuss how to empower our South Asian communities to demand better health care, access available services, and push for more rights from the systems that we should be able to depend upon to serve us!